May 19

I dare to say that we have made progress regarding washing Sarah’s hair! Sc had used a timer to indicate when the hair washing would begin. That seemed to help, so Carl and I have implemented that strategy too. Carl also had the idea to move forward more quickly and directly rather than letting Sarah play for a long time first. This week I was able to do a mid-week wash with minimal fuss and Sarah even tipped her head back into the water when we were done, which is something she normally does NOT do in a bath. This whole venture also received assistance from Grammy a couple of weeks ago because she knew of our struggle and commented to Sarah about how nice and clean her hair looked after her bath. After each successive bath, Sarah has told me that her hair is clean and shiny. I tell you, it takes a village to make these things happen!

Sarah cut her hot dog almost completely by herself! (And at the next hot dog meal she opted to just pick up the whole thing rather than bother with cutting.)

One night Amy was upset at bedtime and Sarah said, “it’s ok Amy” or something like that without any teasing in her tone. It was simply kind. I pointed it out to Amy, who paused in her upset to thank Sarah. That was a small miracle of a moment. 

Amy’s moment of upset taught me that I need to regularly make time when Amy is freshly tucked into bed to check on how she is feeling about things. On this particular night, when I stood up after kissing Sarah goodnight, I was surprised to see Amy looking sad, because she hadn’t been sad a minute ago. I asked if it was about a certain thing. It wasn’t. I just stayed looking at her and waiting. Then she burst into tears and told me about a worry concerning school. Not only was she scared, but she had been trying to hold this fear as a secret rather than share it, so she had had several nights of worry and not sleeping well. My poor sweetheart!! During the day she can easily keep moving on to the next thing, but just before sleep is when the thoughts and worries surface, so that is what I want to make sure I witness and allow to have space.

This weekend Amy and Carl were away for Girl Scout camping. Sarah and I camped in our backyard. The first night it rained a lot, including a few unexpected drips onto my neck, but we were mostly cozy and snug. In the morning sunshine I opened up the tent doors to get some fresh air. Somehow at some point, a bird managed to get poop in the center of our sheet. How on earth?! (did it fly through when we weren’t looking? or did it just angle its delivery with skill and precision?) Sarah wanted to spend all day in the tent enjoying the patterns of our (clean) sheets, but I made us take breaks so we didn’t overheat. We walked to a store to get goldfish crackers. Then she wanted to be pushed in the stroller while she ate the crackers. We did that on our way to her favorite intersection for watching traffic. It has been a very quiet weekend. It was wonderful to have so much easy time together and to be so snuggly in the tent at night. It will also be wonderful to be in my own bed tonight. Sarah is eager for Amy to be home so they can play in the tent together. Earlier in the week Sarah made a sun at school and each ray was labeled with something important to Sarah. The only legible word is “Amy.” (Normally Sarah’s handwriting can be quite legible, but not with this specific item.)

May you have a kind witness for the secrets weighing on your heart, and may you have a cozy snuggly spot to rest.

May 12

It seems that I was mistaken about my cluster headaches being done. I’m on my second round of prednisone now and hopefully this will do the trick. I continue reading the book about how to change my life experience so I don’t get headaches, but I am much more capable of paying attention to anything and making life changes in any way when I’m not dealing with excruciating pain/fear of pain/dread of sleep/exhaustion. So prednisone it is.

Sarah’s school program had their Inclusive Games on Tuesday. Each child from the St. Anthony’s Program is paired with a neurotypical child from their school. They do relay races, ball throws, soccer kicks, and the 50 yard dash. Their scores are for the pair. The cheering is loud and enthusiastic. Then we all spread out picnic blankets in the grass and have lunch together. It is fun and relaxed. It is also often hot and there is a ton of standing and waiting. Last year and this year, Sarah was wilting by the end. But she loves the day and looks forward to it all year. She loves her special shirt that she wears for the day. She loves the ride on the big yellow school bus. Last year, Sarah’s partner had been invited to pair with someone else (Sarah was in second grade last year and is in fourth grade now so her neurotypical class is different), but was unable to attend and was heartbroken.  She was thrilled to be asked to partner with Sarah this year. This, again, is why I love Sarah’s school program. There is such true joy, acceptance (because what is there even to accept? this is just a person to enjoy!), and thoughtfulness from the teachers, staff, students, and parents of other students. 

Amy has started feeding our cat Olivia for some of her meals. Usually this has been for dinner, which is simple because the can is open and she just needs to empty it. This morning she wanted to give Olivia breakfast, which involves more steps and requires the help of a grown-up for some of it. There were many tears of frustration about how she didn’t know how to do some things. Doing things for the first time can be hard!

Sc has some magical skills and was able to give Sarah a mid-week bath including hair washing but not including any screaming. She may have a new job! Sarah and I just had several minutes of a discussion/Sarah-scream-session because I said that she needed a bath with hair washing today. Doing things for the millionth time can be hard!

Sarah has a book that includes a reference to singing “Kumbaya.” Sc taught her to sing the song and it is Sarah’s new favorite thing to sing. She has such a sweet, earnest voice. Sometimes she picks up her ukelele to strum along. I’m thinking maybe she could learn to play it on the piano, and she usually sings her pieces as she plays. I do have a short video of her singing but it is too big to put in an email. If anyone wants to see it, just let me know and I can text it to you.

Some lessons need to be relearned many times. Carl often has ideas of things to do that he thinks will be fun. Sometimes the girls don’t think it will be fun even when they have no idea what it is. Sometimes I worry about all of the aspects of something that might be hard and thus don’t think something will be fun and would rather stay at home. The thing is, usually Carl is right. Yesterday he wanted to go to a music festival called Pittonkatonk. I thought I would be overwhelmed by the crowd and herding children. I thought I might feel awkward and out of place. I forgot that this is Pittsburgh and that even for a regular trip to anywhere, it is extremely likely that I will see someone I know. Luckily, Carl prevailed upon all of us reticent doubters and we went to Pittonkatonk. We had a wonderful time and saw soooooooo many people that we knew, some of whom are among my absolute favorite people in this world. I am already looking forward to attending next year. Sarah loved the bubble machine. She also told Carl at one point, “I am so happy with this band.” Amy enjoyed a wooden chicken on a stick and seeing some of her favorite sitters. I would like to say that we will all remember this the next time Carl suggests something new, but I predict that we will still require some nudges. I do know that my life experience is better thanks to Carl and his enthusiasm for trying new things.

Happy Mother’s Day to my three mothers and to all of the mothers reading this, whether you are a mother to children, animals, a garden, a creation of any sort, students, your own sweet self, your unfolding adventure of a life… May you be surrounded by some of your most favorite people. 

May 5

Snuggly school mornings have continued to go well. Now we just need to figure out a solution for hair-washing. We only do it once a week for the girls, but now Sarah clearly needs it twice a week. Almost always, the process involves lots of screaming and resisting. This is true whether we allow for two hours of no-pressure bath play time first or not. It would be so nice if it could be easier. 

Amy and Carl ran the Kids’ Marathon (1 mile) yesterday. Amy got her best time yet, despite briefly wiping out due to a missing brick in the street. Last weekend we all went for a training run. Sarah and I did a gentle run from our house to a playground a few blocks away. I was amazed at how far she ran. We have a tentative plan for next year that we will all run the Kids’ Marathon. I will need to start training now!

We have had a lovely visit with Grammy and Granddad. Perhaps you heard the shrieks of delight as they arrived, bringing some favorite stuffed animals to visit too. 

I think my cluster headaches are back under control thanks to a round prednisone. I still have tiny traces of them, but that is usual. My body is so familiar with the headache pathway that it can manufacture it on a low level on demand. I have had success with getting the mild traces to abate by focusing on my breathing and using the Alexander Technique. I also started reading a book that a friend recommended. It is by someone who cured himself from cluster headaches. It seems to be about paying exquisite attention to what takes you away from being really present and letting that go so you are fully present most of the time. So I am paying more attention more often to my levels of tension or lack of full breathing. 

Sarah’s first swim lesson as a Turtle 1 went beautifully. It is a good reminder that she can learn anything, even if it takes a really long time. 

April 28

When I was away in England, Carl experimented with changing how he did things for Sarah’s school mornings. Usually I would turn on the hall lights every five minutes for 20 or 30 minutes and Sarah would scamper out to turn them off, saying she was the light bandit. Usually this was fine and she seemed to like it, but when we would switch to getting ready she would start resisting. Carl changed this light bandit pattern to snuggling with her and talking to her to help her (and himself!) wake up. They had to zoom more, but there was more cooperation. When it was my turn to do mornings again I asked her how she wanted to do it. She wanted some of both. I ended up doing a blend of some light bandit time and some snuggling. Mornings went well. She was always ready on time and there was very little to no struggle. (I swear, I feel like with these words I am dooming my upcoming week!). 

Noticing how snuggling helped, I am attempting to mentally snuggle more with the overwhelming mess of my house. I inwardly fight it so much but that either leads to mad cleaning or yelling at people, or just stepping over and around things and feeling yucky but not feeling capable of making a change. I didn’t do much cleaning of the silted-in areas, but I did work on the guest room, which has been my nemesis for ages because it is often my dumping ground when I am clearing other rooms. There is so much more to do, but I am aiming to snuggle with it first, appreciating the mess as an indication of full, abundant, creative lives. 

Sarah was a Minnow for swimming since Oct 2017. This past Monday she moved up to Turtle 1!!!!!! During Sarah’s lesson, Amy stood by the sidelines holding a paper drawing she had made of Sarah. She was shivering because she was wet from her own lesson, but she refused to miss even a moment of Sarah’s lesson in order to get dressed. She knew Sarah was on the cusp of moving up and was cheering and hoping with all of her might, as was I. I’m sure the teacher could feel our eagerness, but given that she had been close for a while, I also trust that he wouldn’t have moved her up just to satisfy our desires. It was clear that she truly is ready. She can jump in, roll over, float, and do specific motions to move through the water while floating all by herself. This is really really really really really amazing!!! I am so grateful to her first swim teacher who was so patiently, enthusiastically creative as he helped her to get in the water at all, eventually trusting him to hold her, eventually being ok tipping even slightly backward while in his arms…. and now, a few teachers and many months later…here she is! As a Turtle 1 she will start learning to swim. Minnows focus solely on how to be safe if you accidentally fall in the water. When our new little Turtle 1 was done, Amy wanted a celebration and none of my ideas were up to snuff. Luckily Carl had the idea to eat dinner quickly and then drive to Rita’s for a treat. Amy said that this day plus the day when Sarah graduated from OT were the best days of her (Amy’s!) life. She is such an amazing sister. Sarah is also thrilled to be a Turtle 1. 

My cluster headaches have been horrendous, despite all of my efforts which included cranio-sacral therapy, massage, Alexander, and more massage. I hadn’t fully understood the purpose of my various different medications so I didn’t know that increasing my verapamil (my normal daily med so I don’t get headaches) wouldn’t do anything to stop this cluster. It is just to keep the beast tamped down once it is under control. The nasal spray that was my “just in case I get a headache” was also apparently something to only use three days in a row but not more. I didn’t know this but happened to be speaking with a nurse about my situation after doing day/dose number 3. So they called in a cycle breaker med (or as I call it: a cluster buster) of prednisone. The trouble was that I had to start it in a morning, which left me feeling desperate and helpless as I went to bed Friday night. Note that cluster headaches almost always occur at night in the middle of sleeping. I got a terrible headache, the sort where my whole body is completely taut with panic, and my head hurts unbearably, and I cannot be still. I woke Carl and he gave me a two hour massage until finally the pain abated enough for me to sleep. Two hours! If he stopped for even a moment then everything was unbearable again. I am so thankful that I wasn’t alone with that. I honestly don’t know how I would have survived, because my coping mechanisms often probably make it worse, but it is impossible to think clearly and not press against my head, seeking momentary relief. Cluster headaches are rare and usually it is men who get them. So I am rare among rare. Cluster headaches are known as the suicide headache because of the intense pain and the despair that can come from the relentless repetitiveness of the headaches, especially if they become chronic (meaning every night or so forever) rather than episodic (every night or so for a month or two). Mine used to abate after 15 minutes if I was lucky and long ones would be a few hours. Now mine have decided to spice things up, lasting for a day or two, and mine are now chronic, which is why I have to be on verapamil all the time. In the early days when I didn’t know what hit me, I didn’t have meds to help but the pain was short lived and then would magically and mysteriously go away. Now I can see that without meds and extra meds and even more extra meds, I would be an absolute wreck, as would my middle-of-the-night support husband. So, thank goodness for the cluster buster and thank goodness for Carl. Last night I didn’t get a headache, but if I had then I would have again been relying solely on him to keep me from going out of my mind. I am tentatively hopeful that the prednisone is already working enough that maybe my cluster is busted. 

Earlier in the week, Amy reached something on the top shelf of the fridge, announcing as she did so that all she had to do was go into a tiny arabesque on her tiptoes. I love that! I love the way her mind works. She also had a moment of being delighted as our cat Olivia sat on her lap. Amy had to stay very still while Olivia got settled, resisting the urge to squirm because Olivia’s paws tickled her legs. This morning she fixed breakfast, with Sarah’s help. Amy told me to wait upstairs until she called me. She set the table with cat napkins as placements, plastic spoons that change color with temperature changes, yogurts, and rolls with margarine and jam. We all had cups of water too. How did my girls become such little grown-ups?!

Sarah is all about sad bears. Sc drew many wonderful sad bear pictures. Sarah drew one too. Her bear was on a bed with a pillow and there was a window with curtains. All elements of Sarah’s picture were layered on top of each other and reminded me of some works by Picasso. I have noticed that when Sarah reads books out loud to herself she is saying and enunciating more words than she used to. For several weeks now when we go to get Amy from school, Sarah walks quickly or runs. This is new and wonderful. It used to be a very slow process and now I am the one trying to keep up.  

I just read Abby Wambach’s Wolfpack and I highly recommend it. She talks about pointing to your supporters when you succeed because it is always a team effort. For all of you who have helped Sarah (and all of us!) get to now, I’m pointing at you. Thank you!! Whether you have been here in person or reading and cheering from a far, it all helps. It really does. For those of you who help me keep my mental and physical health, thank you!! All of you who are in our lives in whatever loving capacity, I see you and appreciate you and you matter. I hope that I can offer similar love, cheering, and support to you.

May you all have ardent cheerleaders, steadfast supporters, meds when you need them, and moments that tickle your mental socks off.

April 21

I had a tremendously wonderful time in London with my friend. We walked and talked and ate good food. We had a tour of the Globe theatre followed by tea. By “tea" I mean the tower of sandwiches and scones and mini desserts in addition to the actual beverage. We saw many birds, including some baby ducks. We saw “The Book of Mormon” and laughed the whole time. We delighted in the ridiculously narrow and unsafe stairs that led to our airbnb. The stairs were probably one of the best parts because of their utter impracticality. We laughed every time we traversed them and I’m sure that will be one of our lasting memories. 

Re-entry to my normal life has been rocky. I know it usually is after any trip, but this time has felt especially challenging and I have frequently not been the person I aspire to be. I feel like I have no tolerance for Sarah’s lack of listening or her grabbing things away from Amy, so I go from fine to screaming in two seconds. This all feels especially frustrating given how peaceful and centered I felt while away. Jet lag hasn’t helped. The fact that my cluster headaches have started again despite being on meds hasn’t helped. I have had a couple of nights where the headaches were really bad. They weren’t yet to the point of my wanting to slam my head against a sink, but they were enough that I chose to wake Carl so I wouldn’t go crazy with the pain and panic. He helped tremendously. I have increased my meds so soon that should have an effect, and I also have various bodywork sessions scheduled this week to help put the headache beast back in the box.

Carl has been amazing overall, of course, because he always is. He has had loving patience for all of us that share his home, even when multiple people have been screaming or crying. I don’t understand it, but I’m blessed to be a recipient. I feel like I should come home and swoop in with loving energy so that he can have a break after the long time of me being away, as he swoops in after a trip or even just a long day of work. He has continued to be creative and energetic with the girls, while I have struggled to keep afloat. When I completely fell apart with the stress of unpacking and reorganizing for other activities, he realized that we had planned too much rather than blaming me for having trouble. There are games in which someone has a card they hold on their forehead and they have to figure out what they are based on what others say to them. Somehow, despite my feeling like a mess of tears and tension and not coping well with re-entry, Carl and Amy have showered me with love (Sarah has sprinkled a little). I can only marvel that somehow my forehead card must be a good one. Rationally I can think of many good things about myself, but in the moments where I have zero tolerance for Sarah or a mess or mundane demands of life, it is easy to feel like pond scum. So I am grateful for the love. 

Amy wrote a letter to the Easter Bunny, asking for the egg hunt to be tricky. It was! The girls had fun and are now wanting to hide the plastic eggs again and again. I admit to feeling a bit stressed over whether the eggs, chocolates, and jelly beans would be found in a fair distribution. Somehow it seemed to work. Amy has also been asking me if I am the Easter Bunny. I don’t respond to her query. Bunnies don’t talk. Amy now wants the rest of the day to be FUN and EASTERish. She is already disappointed. Meanwhile, in this regard Sarah is the easier one because she would happily hide her own eggs and find them again all day. 

Our new favorite song is “Pink Fluffy Unicorns Dancing on Rainbows” by Songs To Wear Pants To. If you haven’t heard it, I highly recommend it.

April 14

There are so many things that advise seizing the day or the moment, not putting things off, following your dream, doing the thing that your heart and soul are telling you that you must do.... Usually I can’t think of what my thing would be. Being in England for my second post-graduate session with Bruce Fertman, I realized that this is the thing I must do. I knew it when I read his book, which is why I signed up to take the course. It is a continuation of the knowing that arose after my first few Alexander Technique lessons that then led me to become an AT teacher. This is what my heart and soul are wanting so clearly and strongly that there is really no option. I must be here. This is what I want to do with my “one wild and precious life”(Mary Oliver). Bruce is one of the most amazing teachers I have ever witnessed. He teaches me how to be with people, how to behold them, how to hold them, and how to help them. His work with people is profound, beautiful, and life changing. I only hope I can come close to such profound work with my own clients and students. I am so grateful for the support and help of those people making my trip possible. Thank you a million zillion times over. 

Bruce works with people in recreated situations that they find difficult. He worked with me as I tried to get Sarah to get dressed when she didn’t want to. One of my classmates stood in for Sarah. It was incredibly powerful to feel myself so tightly lost in my stress and then to be brought so gently back to myself. I literally and figuratively could find my spine again. This is a part of Alexander work that people don’t usually know about because so often AT is associated only with posture, if people have even heard of it at all. But how we encounter and interact with our world, the various posturing and armoring that we do to survive our lives, that is what can be addressed. Alexander lessons, especially with my time in England, bring me home to myself. I have had moments of feeling fuller, freer, and calmer than I knew was possible. This never gets old. I have now been studying AT for about 16 years. It was amazing the first time and it was amazing this morning. I am surprised when I realize that somehow sometimes my hands and teaching help people experience the magic that I experience under the guidance of other AT teachers. It is a dream come true and a dream that I will continue following. 

I had an epiphany on Saturday morning. I woke feeling the tendrils of a possible cold. I was resisting it and hoping fervently, but with some fear, that the tendrils would retreat. I took a walk in the beautiful area around Gaunts House and noticed how much I didn’t want to feel certain things. I didn’t want to feel sad about anything pertaining to Sarah. I have done so much letting go of tension patterns recently that I was able to notice that this was just another tension pattern. It feels deeply hidden and squirreled away, even though I’m sure it presents itself all over the place. Anyway, I let myself really feel the sadness and the fighting energy I sometimes have about our journey. I imagined letting go of any barriers I was enforcing. And then the sadness and fighting was just gone. My resistance was just keeping it close. I know there is a lot of wisdom in the world about such things already, and I know I have had similar epiphanies, but each one is life changing. Perhaps moment changing is more accurate, although lives are changed through the moments. I really changed my moment this morning and after I let go of the sadness and fight, I didn’t feel the tendrils of sickness anymore. 

I now feel a bit sad that my amazing week is over, but I have also learned so much that I am a rather full cup. 

May you know your dream and be able to follow it. 

April 7

This past Tuesday was Autism Awareness Day and I shared on social media about how far Sarah has come, largely thanks to the Son-Rise Program. We have done many different things to help her over the years and SR was by far the best thing we have ever done. She has come farther than I used to dream possible. So many things are easy that used to be laughably unattainable. That said, I would like to give you an insider’s view into this past week of school mornings. This is an extreme example, but also contains so much truth about our daily experiences.

Monday must have been the usual balance of protest and cooperation, because I don’t remember it. Tuesday and Wednesday, Sarah was so passionate about her desire to go to Philadelphia NOW (our trip isn’t for a few months) and wanting to pack for it NOW and dress for it NOW that it was hard to get her to cooperate with getting ready for her bus. Somehow though, we managed. I was thinking what a long couple of months we have ahead for the end of the school year if she remains so Philly phocused. Thursday morning I wondered who my child was because Sarah got ready so easily and readily for every part of her morning. There was no fuss, no discord. No mention of Philly. It was the easiest school morning maybe ever. Friday morning, anything I ever learned or resolved, or calmed in myself went out the window as Sarah and I both got trapped by our own fight energy. She was sooooooo stuck on wanting to continue wearing Amy’s pajama pants that even my usual effective reminder, that if she couldn’t focus on getting dressed then those pajamas would have to go away, was ineffective to say the least. It backfired, which is to be expected with some things but not with pajama reminders. She was screaming and throwing her uniform all around my bedroom. The clock was ticking. After about 17 minutes of her screaming and crying and me yelling, but somehow having the presence of mind to edit my words by saying, “what the heck?!” instead of anything more colorful, she was dressed. When we got downstairs a minute past shoes-on time, which is supposed to be ten minutes prior to the bus’s arrival, the bus was parked outside, waiting at the earliest time it has ever arrived. It was an awful morning. Yes, I should have just said I would drive her so we would have more time. In the heat of the moment, I couldn’t remember that. I never know whether a morning will have Sarah-Jekyll or Sarah-Hyde or some mix of both.

Tonight I fly to England for my second session of post-graduate Alexander Technique training with one of the best teachers ever. I am looking forward to this bit of a vacation and self-care. I will give and receive lots of AT work, both of which nourish me. All of my meals will be prepared by someone else and all dishes will be done by someone else. I will not have to get anyone dressed in the morning except myself. I will sleep without needing to tuck anyone in one or five times. After the class is done I will then get to see one of my best friends who is coming to London to meet me. I will certainly miss everyone at home, but I think Friday morning demonstrates that I am ready for a time-out. I have written voluminous notes on all details of all things. We have an amazingly wonderful sitter who is basically replacing me while I am away. Today I will cook and bake lots of things so the fridge is well-stocked. I have stacks of love notes already prepared so each person can open one per day until I return. Some envelopes have balloons. My bag is stocked with snacks and more snacks, especially because the last time I did this trip I accidentally forgot some of my snacks at home so this time I am overcompensating! 

Even hard weeks also have many wonderful moments, so I want to end with those. Amy created a character named DJ Bunny for which she dons pink bunny ears, sunglasses, and waves a light-up bunny wand while dancing around saying, “DJ bunny! DJ bunny!” Amy and Sarah played a spontaneous duet. Amy played her electronic Vampirina-inspired Spookelele and Sarah played her acoustic ukelele. Amy went with her Girl Scout troop to read to animals at a shelter. She read Home for a Bunny by Margaret Wise Brown to a bunny! I tickled Sarah last Sunday morning while saying “Mouse mouse mouse mouse mouse mouse maaaaaooooouuuuuse!”  and she loved it so much that she has asked for it repeatedly. My replacements have been trained in how to mouse mouse maaaaaoooouuuuse!