Tag Archives: adventures in the NHS

Another Day In I Am Too Tired For This Shit

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My bed is 7’x7′. How in the hell does a child turn sideways then fall off the bottom?

Yesterday MC had their first visit for assessment to see what sort of neurological testing will help find the correct diagnostic labels so that I can narrow down my research on how to support them better.

It was a good visit but, I think, not what the lady had planned. She had a sheet of questions to ask. Instead of going through those questions MC went through a prepared list of the things they have a hard time with. She flipped her paper over and scribbled like her life depended on it. She scheduled an appointment for me to come back alone and fill out those questions about developmental history. 😂

I had talked MC through how I handle appointments as an adult who does not have anyone to report on childhood milestones/attainment. I forgot that MC is not having my life. Whoops. It’ll be fine.

MC is automatically getting 3 separate assessments based on clinical presentation in this appointment and the intake lady hinted about others that might be relevant after we can actually go through developmental history with a fine toothed comb.

This is how seriously Stanford took EC. I was deeply worried I would not find a way to access similar granularity of help for MC/YC. Stanford did *not* take MC seriously. Stanford asked MC 20 yes/no questions and told me I had a perfect little boy I didn’t need to fix. That was really frustrating. This time the lady watched MC almost vibrate off the chair and noticed “Do you find that you are ever able to sit still?” Only if the kid is in a severe dissociated state because they are imploding under the weight of their own anxiety and it is combined with mutism. No. They can’t just hold their body still like a “normal person”. It is not possible for them.

I am feeling a lot less nervous about this process now. The lady also took it very seriously when I said I have two other children who are also clearly neurodivergent. I don’t know what will come of her making notes about my other kids as well. YC isn’t even on a waiting list at this point.

YC’s flavour of neurodiversity is pretty easy to accommodate within our already heavily modified for neurodiversity lifestyle. EC is doing really well with the structure we maintain. MC needs… something I’m not doing and I don’t know what. I am grateful that the NHS is trying so hard to help me figure out what I should do.

The lady looked really pained when I talked about my own history of being beaten up in school after school and how I was not even a tiny bit surprised when people beat up my children in school. Autistic people are magnets for bullying behaviour.

Human beings often want to hurt people who are different. It’s a thing. A really sucky and terrible thing. I was glad that she showed absolutely no sign of believing that it would be best for my children to be in school. *phew*

Stanford Child and Adolescent Development was quite adamant that there is not a better learning environment for EC than what I provide. They had tiny tweaks to suggest, but nothing major. I hope that the NHS can help me find the tweaks that will give MC also the best learning environment for them. Right now there are a couple of areas that concern me and I don’t know how to fix them. I do need outside guidance.

It’s kind of funny that EC doesn’t mostly overlap with my learning difficulties. His troubles are out in front of me and I can study them without feeling emotionally connected. I just need to support. MC and I share some of the same struggles. The ways in which I have never managed to overcome some of my own challenges inhibit my ability to figure out how to help them make progress. I need a more objective view.

But first I need to go run 4 miles. I’d rather eat glue.

I hit the wall this week. I think I was lowkey sick over the weekend when the kids were all very sick. I kept exercising and working the whole time. I don’t feel like I’m still dealing with a fever but my body wants to tell me to go take a long walk off a short pier. I can’t even tell how much this overreach is about physical load and how much is emotional load.

I feel like my soul is hurting. I miss the physicality of all of my California friendships.

It is already getting much colder and I am not feeling great about the change. My body is hurting a lot. I felt like the tiny increase of warmth of spring was a huge massive welcome change and I was going around outside in skimpy clothing because I was overheating. Now the same temperature range is making my bones ache.

I am not sleeping enough. I am rarely laughing and that can’t be good for me. I feel somber and like I have a flat affect. I feel numb. How can you feel numb and pain at the same time?

I really need to go run. I feel like that is an absolutely outrageous ask just now. Oh well. What I want is not important. What matters is what I do.

Emotional hangover

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My whole body aches and feels overwhelmed and dizzy and crappy because I’m having so many emotions. Emotions about lots of people and lots of situations.

The kink community up here is getting big enough/active enough that sometimes there are conflicting opinions and desires. That doesn’t mean anyone is a bad guy or that anyone is doing something that is wrong. I am trying to learn how to effectively communicate and so far I’m not great. I can pinpoint exactly where I was trying to communicate and it sails right past people. That feels bad. That feels like discounting when it isn’t.

It isn’t that someone noticed that I was trying to communicate a thing and said no. The way I was communicating was ineffective and it wasn’t understood that I was trying to say a thing so stuff went in a different direction. That’s reasonable.

But I spent like two weeks trying to figure out how to talk about a thing and I had to spin my wheels very hard and by the time I figured out how to say it the response was, “You should have said this earlier.” I tried. I can point at exactly where I tried and you didn’t hear me. Part of the reason the communication failed is because I was trying to speak as if no one has authority and we are trying to start from scratch and you are used to authority and you just went about your business making decisions without consulting.

It’s an overall apathetic group of people and if you want stuff done you need to make decisions. I get that. That is a really common dynamic. This is such a small group that I was hoping for something more leaderless. I’m not specifically gunning for being the boss. I don’t have that to give.

Our water is off and on because the construction up the hill knocked out a water pipe and it’s not going very well. It has made everything annoying and complicated in our house for two days now.

I had a thing where a friend scheduled a thing then couldn’t make it at the last minute and in this post-Sarah life of mine I am absolutely shit at handling this. T and I had a thing I don’t know how many months ago where for a little while his life got super hectic and he started being flakey about our chats and I shut down and couldn’t speak to him about it for weeks because I didn’t want to explode or completely over react and my feelings about last minute cancellation are fucking huge. I try not to have these feelings. Most of the time I can handle the fact that life has unexpected changes but it’s not easy for me. I set expectations around a thing happening and then when it doesn’t I feel a whole bunch of really overwhelming feelings in a rush and I want to go to my room and climb into bed and not come out for days.

I don’t have space for that in my life. I don’t get to check out mentally for days at a time. I don’t get a lot of undisturbed rest. I get a lot more than I used to, but these things are not easy.

It’s Tommy’s birthday this weekend and that’s bothering me more this year than it does some years. I feel really sad. He would be 47 this year. Only he never got older than 22. He’s been dead a fair bit longer than he was alive. His whole story arc is so sad and tragic and unfair.

My ADHD meds ran out and I apparently don’t get a refill until after some medical tests that aren’t scheduled till next month. So I’m going on and off amfetamines and that’s not exactly ideal for emotional regulation and getting chores done.

We tried to reassign chores. Then a few really expensive wool items of clothing got washed. I’m doing the fucking laundry again and forever after because washing my fucking wool is not ok.

I’m spotting on day 14 of my cycle and that’s not normal. It feels bothersome and emotional in a way I don’t like. I assume it is related to the increase in running lately but it’s always emotionally uncomfortable to me. Day 14 is usually way too early for the PMDD cycle of ugh and crappy to be starting but it sorta feels like I am tanking emotionally and I have no resiliency left.

I feel like shit. I feel sad and lonely and incompetent and stupid and bad at everything. I feel empty and hopeless.

I feel really good when I am out running. I feel fully in my body and alive and strong. Then I come down from the euphoria and I want to crawl under a rock.

Pacing

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I am sure there are many people who would not appreciate me saying this: but I miss lock down. I didn’t have to worry about balancing the various needs of my family members with various outside the home activities and people while also figuring out when to get chores done. I slept more and more consistently. Lately my sleep is shit again.

One of the problems with the age spread of my children is that the shape of providing “structure” for each of them is different. Youngest Child is still small enough that she should mainly be around kids through classes and they all want to start mid-morning and last for around an hour before popping the kids out on the other side expecting snacks and a trip to the park. Most parents of children in similar ages are either nearly in nursery or already in nursery and they are specifically training the kids around having the habit of being out of the house 5 days a week for most of the day so the children manage the transition to primary school.

I get it… but I also find that doing that in the morning mostly shoots my wad and I’m too tired to come home and do a big project of my own unless I do it after dinner and give up sleep. If I am out for the morning the mid-afternoon to dinner chunk is mostly me interacting with the older kids around their school stuff and my brain is just not currently capable of doing something for me while I talk to them. Yay ADHD medication? It feels like too tired because I can’t push my brain into doing many things at once on this medication unless I am super well rested.

If I get a good night of sleep and I start my project early in the day then I can normally handle talking to the older kids about a second thing while I work. (Most projects of this type being garden or cleaning related.) I can talk to them about their literature reading progress first thing in the morning while we continue working on removing nails from the old shed boards because we are going to repurpose the wood. But if I try to do the exact same thing starting at 1 or 2 I get confused and befuddled and irritated and angry. My brain says I can fuck all the way off.

So I’m not making forward progress on a lot of the outside projects I want to do since YC started classes and that’s feeling frustrating. The older kids have enjoyed the descent into too-much screen time that happened during my last painting project and they are absolutely loathe to give it up. They really won’t come out in the mid-afternoon and help me. I can push it in the mornings.

This pacing is not working and I feel exhausted and crappy most of the time. It doesn’t help that Noah’s work schedule is hard to figure out and manage. Working for a company that is 5 hours behind us in time zones gets to be pretty challenging.

I am almost to the end of this session of little kid classes. I am going to try and move the timing. If I can get her into classes that are more like after lunch and less like after breakfast then maybe I can get the big kids through helping me instead of getting on video games first thing then fighting to not have to get off later.

I am getting to the point where I am low key signaling distress in ways I don’t mean to and that’s a problem. Fairly random strangers keep asking me if I have any support because it sounds like I have a lot going on. It depends on what you mean by support but mostly… no. I have been shoving my mental health care needs in a box for a couple of years now. Every so often I open the box long enough to shove something else in then I quickly tape over it again. I’m not ok. I know that lots of people aren’t ok and I don’t have it bad in the scheme of things.

I’m not ok and I don’t have a way to cope with that right now. Therapy isn’t an option–I spoke with my GP recently about head injury stuff. In the course of the conversation she asked me how I was overall coping and I told her not that well. I had previously believed that I would be a lifer in therapy then I moved here and that’s not an option. She told me that she thinks I am being very kind to notice just how limited the access to therapy is here and deliberately not put myself on a waiting list. She told me that she has seen me enough times now to have a sense of me and she thinks that any of the therapists in town could be nothing other than a kind and sympathetic ear because they don’t have more training than I do after how much therapy I’ve had.

This is not the first local expert who has told me that I am the best source of support, tools, and tactics for managing my issues and those of my children in this area. Apparently I put those decades of living in the bay and having access to experts to very good use. Every so often one or the other of the older kids has something challenging happen with regard to mental health because they are people and life is complicated. When that happens I ensure that we have privacy and we get into the heavy stuff. Both kids have said, “I’m sure if I tell you about (_____) you will be upset with me.” I tell them to give me a minute so I can fix my face. Then I put on the “I will not judge you; I will be supportive and unsurprised by anything you say because it’s ok for you to be a person on your journey” face. We talk about their big feelings and the situation and why it is both normal and ok that they are struggling. We talk about the fact that it is hard that we can’t hire therapists to be there through these sorts of things going forward. We talk about what things they can imagine doing to change the situation. I ask if they want to hear about any other options I know about–sometimes they do and sometimes they don’t. Boundaries, yo.

I am not your therapist. I will never be a completely neutral party. I will never be 100% on your side because I am often the person you are in the most conflict with. That is rough. But I am not going to judge all of the things you think I will judge. I am not going to be upset about even half of the things you think I will be upset about. And as you get older I will have to be less and less of who you consider when you decide how you will solve a problem. That is the way forward. I am not and I can never be your therapist but I can help you talk out some of what is bothering you. I definitely don’t have all of your answers but pretty often I do have useful questions. I have been very lucky in my life and the state of California made sure that I had access to lots of people who asked good questions.

I need to start writing even if I am afraid of consequences. I am going to be the closest thing to a therapist I have going forward. That process doesn’t work well without the blog. As my Eldest Child says: “When I write something just for me I delete it or rip it up most of the time because it never seems worth keeping. When I just go ahead and post it right away then even when it isn’t perfect I get feedback and I have to act like it was real and I have to carry on forward as if it has happened and can’t be taken back.”

Of course, she is talking about the status of her fanfic and she’s posting on Wattpad so it’s slightly different. I’ve gotta say that her comments are probably more vicious than mine ever are. I worry about the consequences of my writing because working out my feelings is not a pretty process. Sometimes I hurt people when they know what is going on inside me. If I just shut my stupid mouth and stand near them then they don’t know what an asshole I am and things carry on without too big of a problem.

Being real about all the strife inside my brain is scary. I just about always have as much pull towards people as I have push away from them. My magnetic polarity is really confused.

The thing is: I do shitty things to hurt myself when I don’t work through the stuff in my brain. I am long past the point of the kinds of self-harm that would land me in a psych ward but I am not kind to myself. I do not take good enough care. I do things that will cause long-term damage through neglect or lack of love. It’s little, cumulative things but nothing dramatic that will force other people to intervene. I am smart and I don’t want intervention so let me tell you I will stay below that fucking radar for the rest of my life. There is a lot of room under the radar line to hit a bird and have it destroy an engine.

I am not acting like I am a creature I love who needs to be taken care of. That means I can’t model what that means and that’s a problem. I am very certain that I will never again have a person I talk to all the time to help me sort out my brain. So I have to do it. I need to start doing it a lot again. Which also means I need to stop sitting in this damn chair and use the standing desk. That’s going to have to be step one, Krissy.

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.