October 25

This week seems like it contained years. I feel like I have been through the wringer. My headaches got much worse in their severity and duration. I decided I could no longer continue without medication so I have started on meds and I think they are already helping lessen the severity, though I have yet to stop the cluster. Mostly due to headaches and somewhat due to kids, my sleep of late has been extremely disrupted and of small quantity some nights. I think there was a span of 6 nights in which 3 nights held only patchy 4 hours of sleep, coupled with hours of awake pain. This by itself would be enough to have things feel hard, but what really made this week hard was saying goodbye to Flint. In his final days I felt quite anxious about how to best help him. His back legs had stopped working so he couldn't really move himself around, though he tried. On Thursday, Sonia and A. took the girls out for a field trip. We explained that when they returned Flint would no longer be here. They both told him goodbye and that they loved him. The vet came to our house so Flint had his last moments on the sofa between Carl and me. 

Losing Flint has been a much harder, sadder, bigger deal than I anticipated. I knew I would be sad but I didn't predict how the sadness would come unexpectedly, such as when I realized I didn't have to block the spare car seat so Flint wouldn't pee on it. I didn't realize how much I expect his presence in the evenings or how habitually I look for him in his usual places. He was with us for 15 years. Our house was never empty. Now when we are all out, the house is empty. To tell you a bit about him... he loved lettuce. It was his favorite treat aside from the dried tops of corn husks, for which he would nearly go berserk. He wasn't so much of a lap cat, but more of a on-the-left cat. He always wanted to sit on our left. When he was a kitten, he and Carl used to battle regarding his water dish. Flint would always spill water so Carl kept trying new ways to make the water dish stable. Once, Carl put the water dish inside a dish pan. Somehow, Flint got the water dish outside of the dishpan, without spilling water! When we found Flint, we assumed that he was not available for adoption because he was so clearly (to us) the most ideal cat in the store (a store where the owner took in strays and got them ready for adoption). Aside from puking on our natural-fiber white carpet, he is still my ideal cat and I miss him terribly. Somehow I am surprised that all of the sympathy posts on Facebook and all of my tears have not brought him back to life. 

Early in the week we had a super wonderful thing. A beloved volunteer from a year ago returned after a year abroad! She noted Sarah's increased attention span and how much more language clarity and vocabulary Sarah has compared to a year ago. Sarah remembered things specific to Sc. that she hadn't talked about in over a year. 

This weekend Sarah is getting Anat Baniel Method lessons, which she has received since she was a baby. Today she told me clearly that she didn't want me in the room during her lesson (this is awesome). She eagerly climbed onto the table, ready to watch buses while the lesson progressed. 

Sarah has been giving me lots of kisses this week. It almost seems like an interactive ism, but I will totally take it!

Today I felt a bit judgy towards Sarah. I am aware that this is probably mostly due to my own hard week and not really much to do with Sarah. We also attended two parties today. Parties, for me, are always part fun and part stressful vigilance to make sure Sarah doesn't eat something she's not supposed to or doesn't leave or get hurt. I am much less vigilant regarding Amy. The parties went well and everyone had a good time and it was also good that I was vigilant or else Sarah would have eaten a wheat cracker, maybe had cow milk, probably walked off down the sidewalk away from the party without adult supervision, and possibly picked up a pumpkin basket containing a lit candle. On the plus side, the girls helped Carl carve a cat face into our pumpkin. Amy mainly helped scoop out the pumpkin seeds and Sarah helped with the actual carving. 

As I write, I am in pjs and drinking tea, hoping to gentle the judgy grumps out of myself and reinflate myself from the wringer. 

October 19

We have two new volunteers! It is interesting how they seem to come in waves. For a long time I had no one expressing interest and then I had two within a day of each other not only express interest but come for their initial meeting and begin their training. I think I tend to get volunteers when I am really clear in my thinking that I am ready for them and want them in the schedule. The two newbies fit exactly and perfectly into times I had available. 

We spent this weekend at a rental house in the Laurel Highlands celebrating the 95th birthday of the girls' great grandfather H. It was a wonderful and large family gathering with 18 people total. As with almost any event, I experienced moments as awesome and other moments as stressful. I felt like most of my interactions with Sarah were fraught with many "no's" and much yelling as the sum of our expressions. Luckily this was balanced by many sweet kisses that she initiated. I know I give her snuggles and kisses often without noting them, but when she puckers up to deliver a kiss then I definitely take note. So perhaps she will keep me despite my glaring imperfections. Amy and I had sweet snuggles and easy early morning times. Amy and I also had stand-offs involving much sternness, crying, frustration, and chagrin. I am frustrated by how I can go so quickly from realizing I didn't handle something the best to quickly repeating the scenario. I am trying to be gentle with myself and know that the moments of not liking my children or beating up on myself as terrible will pass and that having one night of only 4 hours of sleep due to headaches and children does not make things easier. It isn't an excuse for my grumpiness but it certainly didn't help. 

Of note, Sarah's uncle A. sees her at least once a week and he said he felt like she was speaking more clearly than a week ago.

Also of note, Sonia is awesome. There were many moments when I was on my last shreds of anything resembling patience when she swooped in to take over. 

Of further note, Carl is amazing. He also had more creative space and kindness for the girls when I had lost mine.

Of continuing note, Carl's whole family is really wonderful and I very much enjoy spending time with them. I appreciate how everyone interacts with everyone with kindness. I feel very blessed to be part of this family and I'm glad they seem to want to keep me even when I have my low moments of wondering why anyone would. (yes, I know this is sort of ridiculous, but once a month (yes) I have thoughts of wondering why Carl is with me, etc. The chosen moment for these thoughts this time around was last night so I could expand it by wondering why anyone in the family would want to be associated with such a controlling grumpulup of a mom). 

Fortunately, everyone does seem to be keeping me. Tonight Sarah came over to me as I was feeling tired and uncertain. She put her arm around me and her chin on my head (I was kneeling on the floor putting away some bags) and she said, "want to take care of mom."

We have a new climbing apparatus for the girls. It involves a tall ladder that goes all the way to the clouds we painted on the boards that protect the ceiling. It has rings, a trapeze bar, a rope, and a gymnastics bar. The girls love it, as do we.

October 12

Flint is doing much better! He is still old and he still has cancer, but he no longer seems to be at death's door. Last night he even got up on his cat perch in our bedroom for the first time in over a week. Thank you all for your good thoughts.

Overall I've been feeling so grateful for all of the support I have in my life from so many different sources. For instance, the woman who cleans my house is so thoughtful and kind towards our whole family. She always makes time to say hello to the girls and she often arranges the spongey bath letters to spell a message for the girls. I love that so many people who enter our house do so with such good intentions and good energy.

On Tuesday we went to a volleyball game to see one of our volunteers and a friend of the family. It was nice to have my friend's help to keep Sarah in the bleachers. The most wonderful moment was when our volunteer, M., saw Sarah and rushed over to greet Sarah (and all of us) with love and delight in her whole being. There is nothing better than seeing someone interact with my child with such joy and love. The girls both cheered, "Go M!" during the game, though not necessarily at an audible volume.

For most of the week I felt like I was really in the groove for responding to yelling with calmness. It was as if I truly understood that the fastest way to get what I wanted was to stay calm, kind, and upbeat. Friday evening this fresh perspective started deteriorating and by last night I was back to full-on frustration and yelling at them. This is where my cluster headaches came to my aid.

For most of the week when I had cluster headaches I was remembering not to do any massage on my own muscles and to just think my Alexander Technique directions. Then there was one headache where I just didn't follow my own rules. Early in the week I gave up on being gluten-free and chocolate-free because it wasn't seeming to make a difference and in the wee hours when I am sick with pain then the only thing tolerable is toast. With the worst headache yet of this cluster, I began massaging my own muscles. It always seems to help at first and then I use too much pressure and make it worse. This time I recognized it and eased up on the pressure. But still. I lost my intentions. The headache was bad and lasted a long time. 

Yesterday I had an amazing Alexander Technique class with my teacher and I felt like I understood something more fully than ever before about really supporting my body in 3D and that to support my arm structure I really need my whole torso involved. While the words seem the same as ones I have used before, this understanding was experientially different. I start with thinking about my top vertebra supporting my head and then my cervical spine and then my thoracic spine, etc. It is as if I am building the support and only moving lower when I really feel it at the top. Last night I had two headaches and with the first I was able to get it cleared within 20 minutes of solid AT thinking. With the second headache the pain was a bit more intense and I saw myself heading down the customary road of constant movement and wanting to do massage. I stopped myself and did my newest AT thinking. Within a minute the pain was more tolerable. The headache itself lasted a couple hours but in a manageable way. This is so awesome. What is extra exciting was my realization that just as with some headaches I lose my intentions and do what I know isn't the best because at the time I feel like I have no other recourse, so too with my parenting moments of yelling. It is all ok. I can just get back on the horse of my intentions that do seem more effective. And I can be gentle with myself for the times where I feel trapped and desperately do whatever I can, even when it isn't helpful or effective. I am just doing my best and oh what a painful, tight spot that must be either physically or mentally for me to flail about with old habits. My headache experience is helping me let it all go and move on. 

While this may seem absurd to deal with the headache pain, I learn so much from the experience, especially this time around. Another realization that I had midweek was how I was getting scared about the pain and tightening my whole being against possible future pain. This fear is the worst part of clusters for me because it robs me of my joy in life. So this time around I had that fear and tension for a couple days and then I saw what I was doing and let it go. I think I am either 1/2 or 1/3 of the way through the cluster so I think I can really make it. 

My AT experience helped me think more clearly about Sarah and Amy too. I want to support them so fully from the bottom up that our interactions are as harmonious as possible. I think this is what we have been doing (or attempting) but thinking about it in this way helps affirm my perspective (not that this was clear last night when I yelled, but as I said, that was a moment where I didn't feel like I could think clearly or flexibly. That doesn't mean I can't reclaim my clear, flexible, supportive thinking today.) What a gift the Alexander Technique and my wonderful teachers continue to be.

Lots of love and full 3D support to all of you.

October 5

We just had a lovely visit with Grammy and Granddad. Sarah spent almost the entire visit glued to Granddad. In the past this used to mostly involve chin presses to his forehead and buttoning and unbuttoning his shirt (great from an OT perspective of fine motor skills). For this visit Sarah started doing a lot of what she has done occasionally post-bedtime with me. She says calmly that she wants to cry, usually while she is already being held. Then she sort of does a fake cry. I think that she wants the snuggling closeness. I keep reminding her that she can just say she wants to be held or to snuggle and that she doesn't have to be crying. With Granddad, she did the "want to cry" and snuggling a lot. She also did some snuggling on Grammy's lap. I'm not quite sure what it means and maybe I don't have to know. 

Amy was very excited about the moose stuffed animals that Grammy brought. Amy named them Moosie and Clara (she names almost everything Clara) but then could never tell them apart so Grammy would pretend to listen to what each moose said. Amy loved this. Hopefully Amy will believe that Carl and I can interpret moose-ese as well as Grammy.

Grammy and Granddad said they noticed an improvement in Sarah's language from when they last saw her in July, and in Amy's language too for that matter. For Amy this is a given, as it perhaps is with Sarah, but I want to remember to notice it as notable just the same.

Sonia has been reading Raun Kaufman's book Autism Breakthrough, which I read a few months ago. It is wonderful to get Sonia's reminders and refreshers about what he says. She has been doing a beautiful job implementing the Son-Rise suggestions of how to respond to yelling/whining/screaming, etc. While I have read the suggestions multiple times and listened to the suggestions multiple times, I have still felt challenged about actually implementing it myself. Being able to watch Sonia do it so cleanly and clearly has helped me. Yesterday for the first half of the day I totally rocked it. And then I totally didn't. Oh well. Thank goodness for help and for other people being better at things than I am so I can learn from them.

The girls have gotten so good at flipping and swinging and climbing the trampoline bar that they have outgrown it. I'm sure they would beg to differ, but yesterday we had an unfortunate moment of imbalance and the trampoline tipped over. No one was seriously hurt, but it showed me something had to change. For now, the trampoline has been put away. I am a bit sad about this since Sarah was just starting to practice doing her usual flip in reverse. However, it isn't feasible to keep the trampoline accessible when it now would need constant adult supervision to make sure only one kid used it at at time and that no one tipped the whole thing. 

Regarding my cluster headaches... I am trying a new approach. In some ways I always do a slightly new approach whenever I get them, but this feels really different. I am not freaking out. I have not started western meds. I haven't ruled them out, but I am giving myself some time to try some things I haven't. (Before being diagnosed I dealt with clusters for roughly 10 years without meds). I am taking magnesium and continuing with melatonin. I am cutting gluten and chocolate and any take-out. I am avoiding even the processed meats that I have approved of before (eg. Applegate Organics Hot Dogs). In the past I always thought that my food choices couldn't be to blame because I eat about the same all year long and the headaches only happen some of the time. But what if this is just a different time and so I need to make different food choices? What if the headaches could be related to inflammation in response to gluten? What if I get a bit under-hydrated and then when things are stressful I often do more take-out and less home-cooked food which makes me further dehydrated? What if that is enough to keep the cycle of headaches going? It certainly can't hurt me to make sure I am hydrated and eating even more healthily than usual. It can't hurt to make sure I get enough sleep, which I am now doing to the extent I can control it. Last week I got two deep tissue massages and on Tuesday I will get an acupuncture treatment. I have certainly received plenty of bodywork during past clusters, but not scheduled so close together. I am wanting to bombard my body with good care. I have found from past experience that working on my trigger points and tight muscles myself actually does not help. Someone else can do it and it will help but when I work on myself I either tense other parts of myself too much or I use too much pressure or something. When I do wake with a headache now I let myself sit up or I lie still and think through Alexander's directions. I don't allow myself to do any massage. I remind myself that it will pass. When I go to bed at night I remind myself that it will be ok to wake with a headache. I even had the radical idea of being excited to be in this cluster and that I could be excited to wake with a headache. I know this may sound ludicrous, but dreading and hating the headaches certainly hasn't worked for me. Being excited to be in the cluster so far helps me stay more relaxed overall and more joyful. They aren't taking over my life. They also have been pretty mild so far. Is the mildness because some of them are just mild? Or is it my different choices (not all of which were implemented immediately)? I don't know how this experience will continue but I am optimistic for the actual experience and for the implications of meeting such a challenge in such a different way than usual. 

Our sweet cat Flint is in the final stage of his life. I'm not sure what kind of timing this means. Any healing thoughts you can send him are much appreciated. My hope is for him to be happy and peaceful, whether he is with us or leaving us. For all that I haven't been as attentive to him as I was before we had kids, I do love him and sometimes find this very very hard. I would love for him to start eating and drinking more, using his litterbox more, and even having the tumors shrink (if we are going for the gold in what we imagine). I would love for him to sit next to me on the sofa and sit in his favorite spots in my bedroom.

As I write, Sarah is having a very screamy time getting ready for the day. While she protests about getting dressed and a million other things, she often is very eager to get ready when a volunteer is coming. I am so tired of the screamies. I want to overpower them with my own force but I keep learning that this doesn't work long term. I am trying to meet it with softness and creativity (though I often feel like a hypocrite for how often I write this and advocate it and how often I do the opposite). At the moment I am meeting it with my absence and letting the amazing, creative Carl be with her. I am reminding myself that it is ok if she isn't dressed and is still upset when N. arrives. That can be part of the program. If you are spending a moment sending good thoughts to Flint, if you could also send some thoughts towards helping us (me) have more space for Sarah and helping her have an easier time with everything that would be great. Thank you.