EC came into my room and said that he had a mental image: Death from the Terry Pratchett books holding up a bubble wand for a child to blow through since he doesn’t have lungs.
He says that will be his first tattoo. We’ll see.
Most mornings I wake up and Noah has a hand or a knee on top of me and Shortie has shoved one hand under me and the other is clinging to me so hard I can barely roll over. This is a bit of a quandary as I am both an incredibly active sleeper and I need to wake up to use the toilet long before them. Getting out of the bed is a very delicate procedure.
I love this feeling. My middle child really doesn’t like to get out of bed unless I come and kiss them awake. They will lie in bed and tell me that their alarm was the gate to waking up but they can’t open it until they get a kiss from me because the kiss is the key.
We are noticing that we can’t get all of our stuff done if we try to do it after 9am breakfast. It’s just not working. So today we are getting up earlier. I have been waking up between 6:45 and and 7:15 for the past few weeks so I said let’s do 7:30. I set an alarm to make sure I can come kiss them awake. What time did I wake up? FUCKING 4:15!! My body is a shit. But it means I spent time medicating and talking to myself. I will be in a much better frame of mind for patiently guiding along my not so little partner. This kid is coming for me in size.
We are working on increasing fitness together. We are not buying a car. We have to be able to easily and casually get around this city and it will always be difficult if we aren’t more fit than we are. We have been consistent about doing it for a bit and I think it will continue until the trip in February quite easily. I need to find a way to have it extend past then because they have to be able to easily get back and forth to town a few times a day. That should be no big deal. It’s not even a full 15 minutes if I ride fairly casually. Just biking is not getting me to where I want to be in my body. I have to run.
And so does my kid. I’m going to make a rule though: we can’t process intense family matters. This is practice for compartmentalisation. You have to be able to talk about things sometimes and not at other times. It is part of how you live in the world. It is part of how you build relationships over time with gradual increases in intimacy. If you walk around sharing every negative thought loudly with every person who walks past they don’t want to help you or be your friend they want to move away from you. That is a simple reality. You have to learn how to choose when and how you share different parts of what you are thinking. We all do. Learning that has been really hard.
This not so little one still needs a lot of support and it has to be separate from everyone else. Alright then. I don’t care that you really want to stay up late and sleep late. I can’t do that. I will be a nasty fucking cunt. I can’t. So. Hey baby. Here is your key to larkdom. Three minutes and counting till the countdown to the need for the key. I better hit post.
I spend a lot of time feeling overwhelmed by how lucky I am. I recognize the gift that is my life. I get to decide how I want to use my time. The vast majority of humans I know get few choices about their time. Most of it is spent on earning money, the rest of their (too little) awake time is a juggling act of mandatory tasks that never get properly finished: cleaning, cooking, laundry, commuting, child care…
I never run out of tasks but I get to pick a lot of them and if I skip others… well my kids and Noah do more with every passing ear. It’s pretty rad. I hope I get to live with competent adult children roommates because they make managing this big house so much easier. They are increasingly capable of just doing a share. Even Shorty is on the road; it took me a while to figure out which chores were best for her at this stage in this house–the Fremont tasks just weren’t right. This house is set up differently.
Shorty told me that on her next birthday (turning 5) we are going to pass along the baby plates/cups/silverware/bowls because she isn’t a baby anymore. It makes me sniffle a bit. I will miss having a baby around. She is already so independent and sassy. We have been letting her do basically anything she wants to do for herself and pushing her towards independence in ways that piss her off. She would strongly prefer to still have us dress her every day; we don’t. She would prefer never to clean and set the table; we insist. It’s a delicate dance. I wonder how I am going to start teaching her that sometimes it doesn’t matter how you feel you have to get it done.
The important thing is to not teach it at home with house chores because that teaches you that rest is not important and that isn’t the goal. But sometimes you are going through airport security and you need to hold your shit together so you don’t draw scrutiny. Sometimes you have to get home even when you are tired and you want to quit. Sometimes you have to shut your mouth and not say what you think and deal with something.
Both of my older children have that in their bones. I am not sure when and how I taught it. I am already noticing that it’s a real problem that Shorty doesn’t have DisneySchool. Did you know that an annual pass to Disney*(whichever) is more effective than a paid for preschool at teaching children how to wait in line patiently so everyone gets a turn? Did you know that Disneyland (the one and only) is the most amazing place in the world for a small child to practice asking for help with meeting their needs? The entire staff is trained to do backflips if necessary to meet any possible request. It teaches an extreme amount of confidence in trying and it’s hard to get that out in the world where most people are mercurial and challenging and hard to predict. As an autistic person Disneyland is the only place on the planet where I believe that I know the price of people being nice to me. I ritualize my understanding of what I have to do to make it more likely people will be nice to me. There is only one place I trust that I know how to do enough. Shorty won’t learn any of this.
Small town life is different. We don’t live in a neighborhood of retirees (we wouldn’t by this point even if we had stayed in California–those folks were selling out and moving really quickly in the couple of years before we left) so Shorty doesn’t get to spend all day practicing conversation skills with all the bored retired people in the neighborhood. She doesn’t have a dozen substitute grandparents. They wouldn’t have been there anyway but it still feels like a way I am letting her down.
There is no such thing as enough time to do all of the things I would like to do with the amount of obligation I have to the kids. They are at such dramatically different stages. It’s interesting to me how much the older kids have shifted such that they do not have similar interests or needs. I used to be able to treat them as more of a block–maybe I was understanding them wrong? I don’t think so. At this point I cannot assume that something is appropriate for both of them it almost never is. Neither of them are adult but they feel like kids who are a lot more than two years apart. EC is squarely teenager and is hilariously low key in terms of what that manifestation means. He occasionally tries to be edgy but I’m his mom so that is a bit weird for all of us. MC is physically heading for puberty but emotionally and mentally they are going to be a late bloomer. I am glad that MC has not been an earlier bloomer because they are not going to handle being hit on by adult men very well.
In a way I feel that Noah and I have done a serious disservice to MC in getting them to stop attacking people verbally or physically. They really struggle with defending themself with folks outside the family and that feels very much my fault. It was hard when the main person MC was physically and verbally aggressive with was EC. We have stopped that. We didn’t mean to stop the ability for all people. Sometimes you have to be able to defend yourself if a stranger is going to perceive you as a woman.
I am having an interesting time trying to figure out how to talk about some things with the kids around gendered language. Until the organs in the body have been surgically altered it is important to pay attention to their health. Having an organ does not mean that you are a gender. Your experienced gender is not always the same thing as your perceived gender by other people and sometimes that matters.
I’ve watched Boys Don’t Cry; I know that my son is going to have to assess safety in environments differently than other boys and men. I have to talk to him about what dietary supplements he needs as a person with the body he has in a way that includes both his EDS and other needs. I have to figure out where and when it is a better choice to hand-make a cocktail of pills because a single multi-vitamin with the wrong word on it feels like an erasing choice. I am grateful that my son remembered his martial arts classes enough to win every fight with every person who came after him in secondary school. I feel incredibly anxious and worried about what we should do to help him maintain his fitness and strength because he may well need it.
My kid is very strongly motivated towards being cute and eye catching. They don’t get more adult attention yet because they still read as so young even though they are just about exactly my height. This trip to London may well be the first time they really catch eyes and that’s going to be a real challenge for them. I worry about how intensely they freeze when they feel intimidated. I feel like I taught this and now I need to unteach it. I am anything but a perfect parent.
I wish there were more hours in the day so I could spend more time with the kids and have more time alone because my hobbies are fun too. Ah well. Be grateful for what you have: I have freedom to choose. I am lucky in a way few people get to be lucky. Sometimes it is challenging trying to figure out how to have a well regulated body. I have to put so much thought into all of my choices. No, my body doesn’t just “do the right thing” automatically no matter what some people want me to think. Unfortunately living on bread/noodle products alone makes me sick. Damnit. That’s what my body wants. Life isn’t fair.
Life isn’t fair and no one gets what they deserve. You get what you get. It isn’t about justice because almost no one gets “justice”, not really. There is chance. There is circumstance of birth. There are a million factors at play and there is no way to get “fair” for everyone like that.
My life is so good. This level of safety and security should be the bare minimum for every human being. Governments could make this happen if they chose to view the planet as a collaborative place that is non-renewable. A safe place to live. Enough food. I can afford to heat my home. I am only called names when I ask very very very nicely. We work together as a family to divide tasks and chores and we work together to maintain the building because there is the serious possibility that my children are maintaining the building they will inherit and you want it to be in good shape so…
This is enlightened self interest, baby.
I think the roads are clear enough for us to walk outside. I am really happy about that. I think Shorty should come with MC and me this time. I am looking forward to the day. Let’s go look at plants.
I really like it when Noah is on vacation. I will like it when Noah is retired. I know more than a few relationships that have ended after lockdowns because people found out they didn’t like each other as much as they thought. I like Noah more with every passing year. I like alone time too, and time with other people. Every single day I am reminded that I am blessed because Noah is my person. He annoys me. He tells absolutely ridiculous jokes. He squicks me on a regular basis but in a way I apparently find incredibly endearing.
No one else in the whole world wants me to be as big as Noah does. Err, Ironically I do mean that in the feeder sense as well as in the spiritual sense. We were talking about some of the ways in which he is socially deferential, to the point that folks in the local bdsm community are assuming our dynamic is very different than it is. People are complicated. Noah wants me to be complicated and he doesn’t mind that it means my needs keep changing.
I am super scattered this morning. I can’t get into a flow. I stayed up too late, mostly through inertia. I need to get into the house a little early this morning. Time for Noah to go back to work and I need to be trying harder for fewer things, more consistently. I have been really needing, and taking, a fair bit of time off but if Noah needs to be working then I need to check back in.
Get ready for the day, wake the big kids, help Shorty with the morning chore, do planners with the kids. It’s time to teach backward planning. If you need to get all of these things done, when should you do them and how are you going to remind yourself? Getting too big for me to be the one who decides and reminds. It’s your turn, darlings.
Easier to do it with a smile on my face after yesterday’s delicious date. I like my husband a whoooooole lot.
I feel bad sometimes when I read other people with EDS/chronic pain talk about their experiences. There are places on my body where if you came up and poked me fairly gently I would drop to my knees from how overwhelmingly it hurt. If I take even the most casual inventory of how my body feels I am always in pain. I just keep doing shit anyway. I show up feeling half dead from exhaustion and I move through sheer force of will. I feel bad because I do not believe that it is healthy that I can do this, exactly, it just hasn’t been very optional for me. I have been in pain since I was a small child and I had shit to do and I had to just get on with it. I don’t know why I feel like I am fueled by rocket fuel.
I am clearly a bad example for my little zebra. Some days he is clearly in intense pain and he gingerly forces himself to keep doing his chores. I ask him why he doesn’t rest when he is in pain. “Well you don’t.”
They do as you do, not as you say.
There are some big goals this year. My big kids asked if we could go on one-on-one fun trips this year. If I am very very very lucky these will be the only big trips of the year. I’m crossing my fingers. One is soon and one is at the end of the year. Both involve me needing to ramp up my fitness in order to manage them while having any kind of a good experience. I am happy that the trip with middle kid is first because they are not starting off with lots more fitness than I have. Phew. I get to pull them along through training work rather than running and feeling half dead and like I can’t keep up. Eldest walks like his dad–they both walk like they are a half breath away from falling into a full sprint. That’s it: they walk like they are doing a run/walk paced run. I don’t walk like that.
MC and I are heading down to London in late February. They want to shop and see some historical sites and pretty parks and maybe a museum. My expectation is that we have to be Disneyland fit in order to have a good time (expect to walk 10 miles a day). I am trying to pull them in the direction of 4mph but frankly 3mph will be plenty fine for actually doing the time in London. When I walk as slow as they prefer my hips get really stiff and I feel like crud so we do have to pick up the pace a little. Luckily they are super motivated and excited. We have drawn up a slowly progressive plan for increasing our mileage and our speed. I am gratefully referencing the book Blacksheep gave me for running training.
I am thrilled about this experience with them, specifically the training, because we are getting to talk a lot about how what we eat and how we sleep dramatically impacts our ability to manage the long walks. I am introducing tracking and talking about evaluating how we feel on different days after different kinds of choices. I’m not controlling all the choices–just requiring reflection on them. They are starting from a place where 5 miles a day is not a lot or extreme so it’s not as much of a moon shot as it seems. Realistically if I asked MC to walk 10 miles today they could; it would just take almost 5 hours. 5 miles is a 2-ish hour walk right now.
Oh hey, it’s snowing again. This year has been so intense for snow–by far the most snow of any of our years here so far. That’s funny because this is our fourth winter and the snow is getting more common and hanging out longer with every passing year. Jenny said it barely ever snowed here! (In her defense the 10 years before we arrived had fairly low historical snow falls.)
As we are training for these… of course we had a big bike wipe out yesterday and MC got a bruise on their backside they are going to be feeling for a very long time. I rubbed them down 3 different kinds of topical analgesics and said we will be doing a lot more on the treadmill until it heals because they will walk awkwardly on the ice and that’s dangerous. Also: no more bike rides unless it is over 5. That sucked.
I love this whole winter hibernation thing. I feel constitutionally suited to having things just shut down for months out of the year so I can work on stuff internally and in my house.
Have I mentioned that I stopped taking the ADHD medication and I feel like my brain is hopping around like a grasshopper on speed?
So MC and I are going to London for a long weekend in February and EC and I are going to Paris, with probable stops in Antwerp, Amsterdam, and probably some city in Germany but I’m not sure which yet. We will be gone around two weeks. Yes I know that these trips seem unfair in terms of size and balance, but EC and I are going to be spending the entire day every single day going from museum to museum (although I suspect the Louvre will be a whole day on its own). He wants to take pictures and notes on as many kinds of art as possible in that time period. To be fair: he knows a fantastic amount about art history and already knows all the periods and most of the masters and who they worked with. He is going because he can already rattle off the names of hundreds of paintings and he wants to see them in person. This is school.
You can see why the kids do not enjoy traveling together very much. After the trip to Texas last year EC vehemently announced, “Remind me never to take a family vacation with any of you people again.” That hurt my feelings. Dude! IT WASN’T A VACATION!!! It was a trip to see a dying relative in a place that our entire family finds overwhelmingly stressful and difficult. There was no way for that trip to go better than it did and realistically it went about 300% better than I expected even with luggage that didn’t arrive for five days. My mother in law was nice for the whole trip. That was outstanding and I can just express gratitude.
Nevertheless there was no part of that journey that was a vacation. Just no.
Between the trip to London and the trip to Paris I am going to be ramping up speed. I will already be in better shape for distance. I’m going to whisper it here first. I want to run the 2023 Loch Ness Marathon. It’s the 1st of October, over 6 weeks before the trip to Paris so I will be nicely recovered after the race. I’ve been working on the treadmill for a few weeks so far in addition to the outside time with MC. I am doing shorter speed work in a controlled environment because I like my knees very much and walking on ice and snow is one thing, running is another.
It’s January now! I am allowed to pull my garden planning information out and plan out my work for the year. I told myself I had to wait out December and just focus on getting through the days. Woo!
I’ve been saying since I got here give me five years before you judge my garden. This is winter number four. I suspect that this coming year’s work is the last of the bones. Of course the deck around the apartment and the balcony off the lounge are both rotting and getting close to dangerous. This house is nonstop. Now I need to leave enough travel space around the house for whoever eventually replaces our windows (many are broken and in bad shape) in the next few years and I can fill in from the edges. In my head I see Noah’s aunt’s property up in Oregon. She has a gorgeous homestead that could probably feed her year round if she didn’t think preserving food was boring and a waste of time. Ha. Instead she feeds the local wildlife. Ok.
My goal in the long run is to be able to walk out of my house and find something to eat every day of the year. Sure a lot of that will be in the polytunnel during the winter but I’m ok with that!
I’ve already added one hazel this year (two other sub-types of hazel are coming but they haven’t arrived yet), two grapes, and a Cherry Silverberry that I am ridiculously excited about. That on top of scores of canes in previous years, a bunch of rhubarb, strawberries, cherries (5 different kinds!)… It’s going to be absolutely amazing. In 4-ish more years I will be able to tell people what kind of produce from my yard will be in season when so they can pick their visit around what they want to eat. That makes my heart soar. I’m doing this.
I may be creaky, in pain, grouchy, and difficult but I am also lucky, hard working, ambitious, determined, and incredibly successful at reaching my goals. I am the luckiest bitch.
We often have to sit down and talk about the fact that we knew therapists were not available here like they were in California so we have to help each other. We talk about the problems with that because a therapist is 100% on your side and a family member has their own agenda. I try hard to consciously and deliberately say out loud when I am saying something that is more from a therapy point of view (this might fuck me over but you need to think about it anyway) and when I am speaking as a parent and a member of the family unit (this will sound like I am not on your side… well… I am in as much as I am part of a system and systems work to preserve themselves).
This morning was such a morning. Puberty is terrible and it destroys your centre of gravity. It changes how you think about yourself, how you perceive other people’s behavior, and how you emotionally respond to things that are upsetting. You get this whole reset and it’s rough. It being rough is in no way shape or form a negative comment on any particular person. It isn’t your fault that this is hard. You are not failing or being bad and you are definitely not crazy even though this process feels so completely out of control. It’s a nightmare and there is no amount of money that could talk me into going through it again…. and I’m a hardy soul.
We talked about how other people remembering things differently is not exactly the same thing as gaslighting. Gaslighting is deliberately and purposefully fucking with someone’s reality as a way of controlling someone. Having a brief conversation that is very important and memorable to one person and easily forgotten by the other person is not gaslighting. It’s sucky! It’s frustrating! It can be super challenging to deal with! It’s not the same thing as gaslighting.
So then we get into: when you feel betrayed/upset/let down how can you ask for a repair attempt in a way that will actually get you what you want? It’s not about “you shouldn’t feel this way” and I’m not tone policing you and saying that you don’t deserve the repair attempt unless you are perfect. I’m saying that we are all human beings. Human beings almost always feel defensive when someone blows up at them. Sometimes the issue is so important that everyone must be held to working it out even if someone was blowing up and that makes the process hard. Sometimes the issue is fairly small and you won’t get what you need unless you play the game. It sucks. It is reality.
Then we came up to the fact that every single one of us messes up and is the person who makes an agreement then fails to keep it sometimes. No one is the bad one and no one is the good one. We all have to learn how to manage each others personalities and it’s a challenging road. We all have to learn how to manifest our frustrations and our difficulties and still live up to our own internal code for who we want to be.
Then of course we did a derail into how many, perhaps most people, are told what their moral code should be. Maybe their parents instill religion as the path to righteousness, maybe someone just imposes secular beliefs but in most families most parents believe they have the right to be the Authority to their children. Noah and I came out of our childhoods believing that each individual person has to be their own Authority and parents do not have all the answers. So we push our children towards figuring out their own beliefs as hard and as often as we can. That’s why you have to figure out how to live up to your own sense of right and wrong.
I said that sin is when you believe in a rule deeply and you break it anyway. People do that. It’s part of the human condition. You don’t have to be religious or have the rule imposed by an outside party in order to sin. All you have to do is betray yourself and everyone does that. That is where the concept of repentance comes in. You repent when you figure out that you fucked up and you need to bear the weight of that and you need to figure out how to move forward with being a better person. It’s a hard and never ending task. The older you get the more you have to repent because that’s just how life goes. No one lives up to their own rules whether they are self imposed or outside imposed. It sucks.
And that is where grace comes in. Grace is when you look at someone who has done something shitty in your direction and you decide to forgive them because you know that you also do shitty things and you believe that this was an error and not malicious. Grace is allowing people to come back from mistakes and sometimes grace involves choosing to overlook the crappy way someone expresses a problem or a solution and just accepting that their heart is in the right place even though they are still a giant turkey butt.
We are all flawed creatures who are trying to cope in a world we didn’t create and we can’t control. It’s hard. It hurts. We will all get wounded and we will all bear scars from our own mistakes and the mistakes of other people. The more grace we give ourselves and the people around us the less we will have to repent. The more love and acceptance we give to the people around us who are doing the best they can the more we will get that same gift back.
To this end I will do everything in my power to speak gently when I want to scream. I will try again when I want to quit. I will repeat myself when I want to never ask again. Because I love you and I want this with everything I am. This is my chance at a happy family. I will not always do the right thing but by golly I will keep trying.
My birthday is coming up. Going to Texas and England this year means I am not running away by myself. (Important note: the woman we went back to Texas to see has now passed away. I have no regrets over prioritising that goodbye trip over other more fun activities for this year.) Noah wants to be thoughtful and asked me what I want. I want to not want anything so I can’t feel let down. I want to have patience for the 973,383 times I will have to remind my children to do basic chores (like brushing teeth). I want to not miss my mother. I want to go back and rewrite my back story so that my impending birthday doesn’t feel like a hand grenade about to land on my head. A buddy suggested that I go camp somewhere for cheap, but I have been working too hard. I couldn’t right now. My hands are trashed.
I have an old friend staying with me. It is complicated in the way that integrating a new person with deep grief, and addiction issues, and learned helplessness will be. To be fair, every time I feel like I am going to freak out about an issue I have to address he is responsive and polite and most of my requests have been acknowledged and respected. But negotiating and setting boundaries is hard. It’s One More Thing on my emotional chore list and I’m tired.
It has been a fucktastically busy year. Busy on so many levels and my exhaustion is, once again, bone deep and completely saturating my soul. I feel numb and on fire and empty and aching. I deeply miss the comfort of tracking things that happen in my blog because I benefit from the space to process but mostly I do not feel I can anymore. I have reached a certain age where I now have to be realistic about the fact that I am not really going to make more very close friendships. Sure I can find new activity partners, but it isn’t the same thing. The people I have met in the last few years I am deeply conscious of this careful distance I keep. They are not allowed to know me. And I cannot talk about my deep relationships anymore because when I do I ruin them and it is absolutely all my fault.
So I do small bits of processing with people but very little in my historical record. I do almost none publicly. I mostly stuff my feelings and feel disconnected. I do not expect or hope for any kind of improvement.
I worry that the adhd medication was effective and useful for a time and it has gotten to the point where it is causing as many problems as it helps and I am starting the process of weaning off (with medical supervision do not fucking criticise me).
I watch the incoming terrifying blend of natural, political, social, and financial disasters hitting the UK with a sense of grim apprehension. I have been waiting all my life for a moment like this. I feel horrible about the fact that a lot of people are going to suffer terribly, some are going to die, but it won’t be my family. I continue my grim plod towards being able to provide a variety of supplemental food because I think famine is coming. I am installing solar panels with a battery system. I am installing rain butts, many and as large as I can manage. A chicken coop is finally being built. Hell, I’m even building a firewood pile because I worry that there will be a cold snap before the solar panels are installed. By the end of fall I will finally have my polytunnel set up for next year’s food growth.
I am working as hard and as fast as I can.
Noah’s job has managed to go most of the way towards fixing the issues that were happening with his salary. This is good. It would be a terrible time to go do a job hunt. I think we only lost a year’s worth of progress towards retirement. I am deeply aware that the fact that he is so insulated from the current global difficulties with regards to fair pay that he is still going to be able to retire before 60 means that I will never really understand the rest of my generation. Marrying him was hitting the lottery. I did not expect this. There is no fair. There is no deserve.
Even in company I feel lonely. I know I am not meeting anyone else’s emotional needs and they are not meeting mine. I do not know what could be done to change this. What I do know is that I am not suicidal and I am financially and physically prepared for more hardship than 90% of the planet. Maybe my expectation that things are going to fucking suck is almost a good thing. I am going to persevere. I will endure. I don’t need to be happy. I need to get the fucking work done.
And right now the next task on my list is to go make Middle Child a birthday cake. They are turning 12. Puberty is arriving and it’s going to be a wild fucking ride.
I was talking to one of my kids earlier today about some of my old friends and they pointed out that it is something like half of my friends-made-before-we-had-children group that has at least one child who has transitioned/is transitioning.
This seems like an excellent sign of my good taste in people. I have always been attracted to my people. I also have a significantly high rate of befriending neurodiverse folks. I suspect some correlation there.
(I think it is probably actually somewhere in the 30% – 40% range of families I know but even so that is phenomenally far outside the 1% rate of transitioning in the general population.)
I like documentation. Documentation is awesome.
On Monday the 20th at about 1:00am our first notice of a problem was middle child waking up to vomit all over the sofa bed and floor of the hotel we were in. Cleaning that up sucked because the hotel didn’t really have cleaning supplies available. Suck.
Because of the railway strikes I already knew that if we waited until the 21st to go home… we couldn’t get home from Edinburgh on the train because of strikes. In retrospect, since we took the bus anyway, we maybe should have done that? I don’t know. I also knew that our hotel was booked for right after us and no other rooms were available anywhere nearby to allow us to wait out illness/strikes.
So we cleaned up and went back to sleep. Later on Monday the 20th we got up and packed up and took a bus to Birmingham (strikes had already cancelled all trains leaving Stratford-upon-Avon). Then we boarded what was supposed to be the first of three trains home. The second train was so delayed we missed the third train. I scrambled and found a bus route home. While we were on the bus Scotrail announced that they were adding one last train to Inverness. Damnit. MC woke up long enough to make transfers and otherwise slept through the ride home.
We arrived home at about 11:45pm on Monday the 20th.
Middle child spent Tuesday the 21st in their room on quarantine after a positive covid test, mostly asleep.
Wednesday the 22nd Youngest child developed a high fever and intense exhaustion and body pain and went to bed. We decided there wasn’t a point in putting MC in quarantine if YC was sick too because she is too little. I got some chores done in a big hurry because I could see that this wasn’t going to go well. I already felt cruddy, but a walking wounded kind of cruddy. In between chores I would end up snuggling YC back to sleep every time she woke up crying. Noah and EC both felt cruddy but not incapacitated. MC was awake for more of the day and happy about lots of computer time.
Thursday YC could not handle having me get out of bed because everytime I moved she cried. She was miserable. I didn’t feel good but I didn’t feel heinously bad. I was pretty happy about the rest even though I was super upset to miss an event I was supposed to freakin host. Whine.
Friday was my day to be flat out in bed mostly asleep. The chest congestion was still minimal. I hurt everywhere and couldn’t stay awake long enough to follow most of the bad movies I had on for company. YC was up and playing and complaining that no one wanted to entertain her. MC was feeling a little better but far from perfect. EC was feeling crummy but not a lot worse. Noah was still feeling cruddy but only a little worse. Noah and EC still test negative at this point.
Saturday I was awake slightly more but the pain was worse and the congestion was starting. Lots more coughing. Very full and disgusting hanky. YC was able to get up and move about but very grumpy and whiny and miserable. Noah felt worse but still able to do stuff. MC and EC both complained about not feeling well but managed to do what they felt like doing. I was barely able to stand and walk to the the toilet. I took a covid test just so I could double check. Yup, positive. YC hates the test so we are just calling her positive.
Today is Sunday the 26th. I can stand and walk more than yesterday but not for long without intense dizziness. I need to lean over the counter and rest if I am up for more than 2-3 minutes or get a chair. I am hacking up half a lung in disgusting productive coughs. It is less prolific as I am awake/closer to sitting for more time. It took a while of hacking to be able to breathe this morning. Today will definitely be a bed day. EC and MC both say they don’t feel good but they are in playing video games. YC is in bed with me because she doesn’t want to be up. Noah says he feels worse than the previous days but he hasn’t come to bed yet.
Being sick with a fitness tracking watch is fascinating. I can watch my resting heart rate climb (over 90 when usually it is in the mid 70’s). It does its best to monitor my oxygen saturation. It is monitoring its opinion of my “stress” rate (higher than it has been through the entire time I have owned the watch). Yesterday it claimed that my stress was skyhigh and it spent the whole day begging me to rest. I was flat out in bed barely moving enough to use the toilet or eat. My “average” for the previous year was a stress level of 37 and yesterday it was up at 81. Hm. My pulse oxygen readings are also lower than normal but probably not low enough to call a doctor yet. Low enough that I am monitoring it.
I knew the chronic bronchitis would be a problem if I caught covid. I’m coughing more than the rest of the house combined. Damnit. Not that I wish they were sicker. I don’t.
This was a very bad week to lose my glasses. I have a super bad headache. Ugh. Typing this was hard. Time for a nap.
I think this would have been mostly our approach if we had stayed in California but it is a little bit hard to judge. Over the past few years Noah and I have increased how much we drink for a whole bunch of reasons. We both still drink a small enough quantity that a Scottish doctor will laugh themselves off their chair at the idea that we might have a problem with drinking. But we have a drink a few nights a week and rarely more than that in a night. (Ok, sometimes the drink is stiff.) The older kids ask for tastes sometimes. Middle Child asks slightly more often than Eldest Child and EC occasionally “sneaks” a little bit of something. I put sneak in quotes because she always tells us that she has done it and asks if we are upset.
That has been kind of a consistent theme with her lately. She is pushing boundaries on doing things on her own when no one is around to witness but she doesn’t push that hard or that far and she almost always feels super guilty and fesses up really quickly. Like: I put the baking chocolate/candy in a little plastic box with a 3 digit code on it. She spent weeks figuring out the code then stole some M&M’s. When I finally noticed she laughed hysterically and confessed her prank and immediately offered up more money than the candy had cost to start with. On her own she poured a tiny little bit of the Jammy Red wine and drank it. I believe her that it was a very tiny amount because I didn’t even notice the amount in the bottle change.
The other day MC asked if I would pour them a little bit of the white chocolate liquor that I like a lot. I poured about half a shot glass. They took two tiny sips and declared themselves sated and handed it back with most of it remaining in the glass. EC very much likes a particular brand of cider that I get and when I open a bottle she asks me if she can pour some of it in a cup and share. The whole bottle is 2 units of alcohol and she takes about 1/4 of a bottle. I don’t see a problem with that.
I feel like each kid probably consumes about a full unit of alcohol over a two month period. But they are adventurous and eager to find out what they like and they are developing strong opinions about brands and types of alcohol. Mostly they don’t like the vast majority of strong stuff and that makes me pretty happy. They almost always have a little bit and then say, “Ok I feel that. I’m done.”
I don’t remember seeing anything like this when I was young. When young people got their hands on alcohol they would chug it as fast as possible even when they thought it was horrible. I feel like my kids will be able to go to parties as young adults and only drink if there is something they really like and then not to excess because they are learning what it feels like in their body to just have a little.
Noah and I model fairly conservative habits around drinking. I am not sure when he was last drunk. I really struggle to remember a time when he has ever been woozy or more than a tiny bit extra goofy–but really who could tell when he is such a super dork all the time. (I read him the last couple of sentences and he says he has been drunk and I just didn’t notice because he was low-key about it. Oh, ok then.)
I got super drunk one night by myself super late. I was hanging out in a chat room and I got super silly and it was really fun. Then I went off and brushed my teeth and went to bed and it was a normal day the next night. I also got super drunk night one night when I went off to see friends on the East Coast of Scotland last summer. Like rolling around on the floor singing along with silly songs, drunk. I think that is it since I had kids. I don’t drink a lot.
I worry about this because I have friends who had terrible alcoholics for parents and I don’t want to hurt my children the way my friends were hurt. I am hoping and praying that I am threading the needle on modeling moderation and drinking because sometimes it tastes nice instead of drinking to cope with life.
So much of parenting is this terrible guessing game about “Ok, how am I fucking up my kids?” In this way I feel like we are not doing too terribly. I hope it continues to go well. Of course we are following Scottish law and Youngest Child is not entitled to taste our drinks until she hits the ripe old age of 5.
I shit you not. That’s the rule in Scotland. Children under 5 can’t have alcohol. I guess her next birthday is going to be a real banger. I’m kidding. It is pretty funny, though.
Here they don’t do annual well child visits with home educating families so a lot of the normal medical records I have for the older kids won’t be duplicated with Youngest Child. I was talking to someone about car seat/booster needs so I went and checked on where she is in terms of height and weight. This blog (mostly the parts that are now private) are the only place where I have recorded most of this information so I’ll log this today.
She is 108 cm and 18.7kg tall at 4 years and not quite 2 weeks. According to my reading of the charts that means she is around the 95% for height and about 80% for weight. She is a very solid little thing who runs for most of the day so she has barely the tiniest of pudge on her–she’s muscular.
I think that means she is on track to be in between the older two as adults. Oldest Child has past me up at 13 and Middle Child is getting there fast at 11–I think MC will pass me at 12. If the percentages stay true to adulthood MC will be the tallest, then YC, then EC. I get the general impression that EC will resent this for most of their adult lives. Ha.
If my memory is serving (and I’m feeling too lazy to go look it up) MC has stayed around 97-98% for their entire childhood and EC has always been around 85-87%. YC at birth was only in the neighborhood of 75% but has shot up since.
I mean… we’ll see. I have just done such a poor job of record keeping that I feel like I should write it down when I think of it.
I’m pretty sure that folks here are already aware that we use “kersquirble” to mean adding sugar and milk to tea to your personal taste.
The other night Noah and Youngest Child were at the table and she asked for a cheers. They clinked glasses and he said “Kanpai!” Then she said, “Cow pie!”
Our oldest kids observed that we are going to confuse people when they come over for the first time and we push the sugar/milk tray towards them and tell them they can kersquirble their tea then we hold up our classes and exclaim cow pie!
But I mean… in jokes are kind of our thing.
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.
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.
I am on day 42 of my cycle. I start running low on hormones around day 26/27/28. I usually start sometime between day 28 and day 35. It’s been pretty consistent since the last kid. I am… not ok this time. I can feel the complete and total lack of energy or happiness or give. My bones feel worn out and terrible. The numbness in my hands is super bad at this point. I know that a lot of that is how much I’m painting but progressively over the last week it has gotten worse and overwhelming and awful.
My whole body is hurting. I haven’t had many spells like this since I moved here. This is a California-level of pain. I feel sad and irritable and angry and disappointed in so many people and situations and results that I feel unable to cope. I am not suicidal; which is a blessing–that doesn’t darken my door much anymore. I just feel like I’d like to crawl in my bed and cry for a few days until my period starts because I am completely out of cope. In the overall scheme of things that is a relatively healthy and sane impulse and I feel proud that I am in this place now instead of where my lows took me ten years ago.
It is weird being able to list things that I miss about California and reasons that there were advantages there that I don’t have here… while completely knowing that I am overall doing better here than I ever have. Do I still have pain? Yes; particularly when I am drifting back towards California-style work habits that I know are dramatically not good for my body. Do I still have some anxiety? Yes; my anxiety here is so different. I can’t put a number on this to do like a “rate your pain” scale. Knowing that I will never run into Dan or Paul or my mother or my sister or Auntie or Anna or Brittney or or or or or means that I no longer live with hypervigilance. It’s not that I believe that nothing bad can happen to me I just fully accept that scanning the room for exits is not going to be helpful in any of the bad things that happen to me going forward. I can’t tell with a casual glance who is going to be a problem so I just… don’t.
I mean, when the dude got out of his car to yell at me and smack my hand I didn’t freeze up or start crying or react poorly until after he drove away. I stood my ground (in a suitably gun free manner) and I defended myself verbally and I took his picture. I did what I think I should do. And now I don’t scan looking for him or his car because I am pretty confident that if he ran into me in town and harrassed me again I would simply call the police and tell them we had another problematic interaction and he would get in trouble. They put a mark on his record.
I am living in a small town where the police get upset about that kind of thing between strangers. It is still hard to solve between neighbors… but that’s a whole different dynamic. Stranger assault is prosecuted.
I’m anxious about saying the wrong thing to people I am trying to make friends with. That isn’t gone but it is different from California. I find it intensely healthy for me to be consciously aware that people here don’t owe me anything. I haven’t been doing things for people for years with the hope that someday things would shift and they would support me when I needed it because they love me. That’s very freeing.
Even though typing this is terrifying for me I’m going to do it because this space has to be for me if it is going to work. Even things with Jenny have leveled off and found a comfortable stasis. We are not trying to live in one another’s back pockets because we are both cat-like and we like a lot of space. There are topics we kind of avoid because it feels like those aren’t the best ones for us. It’s feeling really comfortable and happy for me. I can only project and not speak like I really know how she feels but she isn’t expressing any dissatisfaction with our relationship. I feel like I pushed too hard when I moved here and we had to work out how to deal with each of us having our prickly points and it has worked out. She remains one of the people I love most in the world. I would bury bodies for her. If something catastrophic happened I would absolutely rescue her or her kids or her husband. I believe with my whole soul that she would show up for me in an emergency. I am feeling safe and comfortable that we have managed to find a nice place between us. I suspect in 5-10 years when our kids are older we will see each other a tiny bit more than we do right now but we are both people who are very comfortable in our own company and that’s not a bad thing.
I’m slowly working on other relationships in town and that’s slow going and complicated because people are like that. I like living here and I think it is going to be a good space for me in the long run. I worry a little about Noah’s place here because he is a lot more constrained than I am in terms of going out and meeting people. He’s going to need friends in the long run too and having them all be on his computer is mixed.
Kids are a pain in the butt. I’m just saying. This has been a bad week for me in terms of my emotional state and that’s no one’s fault. Also: my kids have been buttheads a few times and we’ve had words. I feel so intensely proud of myself because we had words. I didn’t shout. I didn’t scream. No one was punished or denigrated. “Hey this thing is happening and it’s not ok and we need to talk about why.”
Ok, take a deep breath and really feel that. Even when I am upset and I want to freak out because of hormones… we talk. I say, “Hey let’s explore some of the angles you aren’t seeing on your own right now.” When we are done they understand why I am asking for a change (it may or may not happen–let’s be real) but they aren’t angry with me for bringing it up. I understand more about why it’s going on from their perspective. It’s not ok to just silence people when they are inconvenient. Children aren’t problems they are *having* problems and talking about why is important.
It is so hard that my older kids are very much in a place where many of their problems are now things I cannot fix because it isn’t about me. The main upside of that is they are starting to feel in their bellies that it is true when I say the same thing about my problems. “I’m not upset about you. I’m having a problem.” I can see Little Girl struggling through what the older kids went through and she is directly acting out her stuff with her dolls and it’s interesting. I feel so much more emotionally/mentally distant from the process now than I did when the older kids were that size. I will roleplay with her with her dolls.
So yesterday morning I woke up and I felt awful and I cried some. It’s not because anyone did anything. Then Little Girl came in and joined me for a snuggle and she does this thing where she likes to dig her feet into my legs. Sometimes it is ok and sometimes my body hurts and it is super painful. I was already crying so of course she felt bad and took it on herself. Later she had a whole scene with her dolls where she was talking about them hurting her by poking her legs so she was putting them in time out because it’s not ok to be mean to her. I roleplayed one of the babies and talked about how I wasn’t trying to be mean; I was trying to be close because I love her. Is there a way I can be super close without hurting her? I am scared to go in time out right now because that means I broke a rule and I don’t want to feel like snuggling is breaking a rule. She was so kind and loving and caretaking with her baby. It was really wonderful to watch. “Oh my gosh! You are right! Snuggling is not breaking a rule. Maybe we should change where we are snuggling so that you don’t hit my legs and hurt me.”
My grinch heart grew three sizes.
(At this point pretty much the only rule she breaks is screaming in the house and you have to take big voices to your bedroom. This is not California and I can’t insist that all screaming has to be in the yard because of weather.)
I don’t talk about the big kids much anymore because they deserve privacy and walking the line is complex. But I do want to say that it is fascinating to me just how much they still ache for my approval. (They get a lot of it–I’m not saying this is a hollow thing.)
My Oldest Girl is pushing so hard to individuate and good golly hormones have hit her like a freight train and she has so much hostility about injustice and difficulty in the world. Saying good morning at the wrong time is fairly likely to get a stiff middle finger. I go with it. I try hard not to take almost any of it personally. We are dancing around the balancing act of “I’m still your mother so sometimes I am going to be obnoxious and I will want to give you a hug and a kiss. If you truly object in the moment you are allowed to refuse but mostly it’s a good idea to let me do it.” She is doing a lot better in terms of mental health since she stopped going to school. Things were getting really bad for a while there. We come from families that have a lot of depression and anxiety and PTSD and suicide. It would be highly unethical and neglectful for me to not act quickly when I can see my child melting down because of abuse they are receiving. She is starting to blossom again. She is returning to herself and I love seeing it. It’s going to be a process for her to find friends here and school is not going to be the solution. Her art blows my mind. She has so much talent and skill and she practices all the dang time. Her writing is fun and engaging and she is absolutely brilliant at creating pictures in your mind of what is happening to her characters. She still needs a bit more work on exposition but that’s not a terrible lacking–just something to think about and work towards a bit more. She is strong and fit and confident and willing to speak up for herself. And she’s taller than me and built like 30-something Taylor Swift and I cannot even.
My wonderful and delightful Enby is still plugging along. Puberty is happening and it’s a roller coaster. It’s interesting how the acting out is different now from when they were younger. They have so much more self control than they used to have. They still have giant feelings that are hard to manage at times but they know which direction they are growing towards/working on when it comes to expressing those feelings and they are consciously and deliberately learning skills around that. I am so impressed by the effort they put in to being self aware. They are baking and cooking and tweaking recipes and being brave and adventurous. I am sad we didn’t get a better evaluation done at Stanford before we left because they clearly have some specific learning challenge going on and I’m struggling with figuring out what it is. They really have a hard time with some aspects of education and we are trying a few different things because I don’t know what direction is the right one. They are making progress but I think they are always going to be a person who is much better with kinesthetic and active and oral learning rather than on paper learning. It’s really cool watching them learn coping skills around that. They want competence and if they have to route around an area of challenge for that… well just get on with it. They alternate between being this absolutely startlingly compassionate person and being a normal kid. I see them being on this see saw towards adulthood and it is so clearly part of the process they need to follow. They progress intensely then they regress a bit then they leap again. The more patience I show and the more scaffolding I supply the bigger each leap is and the smaller the regression. If I am impatient or difficult about the regression then it intensifies and they can’t leap again for quite a while.
It is fascinating living with these children. The Oldest doesn’t need my approval all the time–once in a while she succeeds in order to spite me. The Middle craves approval like it is heroin. They will beg, borrow, steal, to get it. They do not function well at all if I am anything other than a full throated cheerleader. Rebukes and course corrections have to be delivered with the softest of touches or they wilt and don’t recover for days… sometimes weeks. The Littlest is so small that she still needs tons of redirections towards “Oh hey it would be great if you….” “Oh golly if you do x then y will happen and that’s not good.” I suspect she is going to be more on the spitfire end as she grows. Her threenager year has been so very long.
This post brought to you by the good news that one of my buddies now works in the paint store and he is encouraged to give a friends and family discount to people and basically no one he knows buys paint. I was talking about the sorry shape of my arms right now and how I am pushing myself raising the clock before the paint dies and he told me to take a break. It won’t be nearly as expensive of an issue to fix as I fear. Ok. I will listen.
So I stopped painting a week before my purported end date. I have a ton of other work to do that has been sliding through the cracks. This will be in no way a bad thing. I am exhausted in a way that means I am not sleeping enough because I can’t shut my brain off to sleep. I’m craving alcohol like mad. I think at my next cycle of talking to the GP and psych nurse I will say that I think I am ready to both increase the Amitriptyline and the Lisdexamfetamine.
I am still on very low doses of both and getting closer to a normal dose would be useful at this point. My blood pressure readings are so so so much better on 30mg of Amitriptyline. I’m back in the high 120’s-low 130’s/high 70’s-low 80’s. There is still room for improvement but that’s not dangerous or scary. More Amitriptyline would possibly help with that. Losing weight would probably help with that.
These medications are breaking the stalemate of my weight plateau. I’m still eating whatever I want whenever I want. I am drinking some alcohol (in the range of 4-6 units/week because I know drinking is not recommended on these meds) but not nearly as much as I was. I am not doing tons of exercise because I have been in the house painting all the time but I am still doing the twice weekly yoga and I’m riding in the neighborhood of 20-ish miles a week and even occasionally getting in a decent length walk. I’m not sedentary but I’m not over-exercising in a way that would cause weight loss. So I really believe the drop is as a result of the medications at this point. I didn’t think to weigh myself right when I started the medications. The first data point I have in this year was in February and I was 211. In late August I was at 203. As of this week I saw 199 for the first time in a long time. I repeat: I am not dieting. What I am doing is taking medications that change my brain chemistry and increase my serotonin changes how my brain processes dopamine. That’s making my body not feel like it needs to hold on to fat in the same way. I’m not doing this because I want to lose weight; I am noting physical changes in a way that can be measured. Things like mood are harder.
The PMDD window is something that can overcome the positive effect of any medication in my experience. I am seriously dreading the peri-menopause experience of my cycles gradually lengthening. I expect the next ten years to be hard. But it’s not like any decade has been easy so get on with it. I am deeply grateful that I have gotten to the point where when I feel really low that does not increase suicidal ideation or fixation. I am grateful that I don’t struggle with the desire to mutilate my body anymore. It is complicated as fuck dealing with my children as they have times of feeling like they want to hurt themselves. I am grateful to the marrow of my bones that they know they can trust me and talk to me when they feel like that. Yes, you can always come in my bed and snuggle if you feel you are scared and you aren’t safe to be alone. Puberty is a horrible time and we’ll talk and we’ll get you through this.
If therapists were available they would be in therapy. I didn’t understand the depth of privilege we had in California around mental health. My entire life trajectory happened because therapy was plentiful and that would not have been possible in other places. All my kids have is me. That’s fucking daunting. (I mean, they have friends and we are making community connections…) We talk a lot about having thoughts and feeling impulses doesn’t mean anything bad about you. Let’s talk about the possible consequences if you follow through. I’m not saying I will punish you; I’m saying that once you cross the line into these behaviors there are people in the community who are bound by law to intervene so if they find out this is what will happen. It’s out of my hands. Let’s talk about strategies and ways of coping and figuring out what other things could be done instead. Let’s build habits around feeling distressed so that when something even worse happens you have some pre-built ruts in your brain for how to handle bad things. Let’s talk about distorted feelings and projecting and learning how to scan your central nervous system and what tools exist to help you feel grounded and like you can wait to act–this feeling does not require a response RIGHT NOW. For the record no one is actively suicidal, no one has any kind of plan, and people are not engaging in the sort of behavior that would involve mandatory removal from the house.
What is happening is that they both have had to deal with bullying and additionally people have been telling my daughter that she should kill herself. They are both just children and this has been hard for them. They have every predisposition genetically towards mental health struggles. Life was never going to be a walk in the park. There were always going to be dark times. But you can bet your fucking buttons that I am going to teach them how to light a candle in the dark. (I got some LED candles so nobody else tries to burn down my fucking house. Oh good grief.)
They are kids. They are all so different. I like all of them. I am annoyed by all of them. I admire all of them. I enjoy spending time with all of them. I don’t know what their future will bring but I sure hope that I get to be an enthusiastic cheerleader as they go do all the things they will do. I tell them that when they don’t believe in themselves they can borrow some of my faith in them. I will never ever run out.