February 26: Pandas and a Plan for Next Year

Last week the muscles around my left hip were not happy after an intense workout with my trainer. It took a couple days plus some work from one of my students before I felt normal. Then out of the blue I was hurting again. Then I got better. Then I saw my trainer again and the muscles were aggravated again. What is frustrating is when the muscles are too tired or tight or strained or whatever, then the joint feels uncomfortable in the way my right one used to feel. I was limping Sunday afternoon and not able to walk up stairs normally. The good thing is that it seems tied to muscle function as of now, but not being able to walk normally kicked up all sorts of fears and feelings. I now have a ton of recommendations of possible surgeons if I do need another hip replacement. I don’t think I need one soon, but I want to have plenty of time to find a surgeon that I like and who works out of a different hospital than where I was last time. Everything was ooookaaaay last time, but not wonderful. Not that I expect surgery to be wonderful, but all of the supporting details matter. Anyway, I’m back to normal functioning now.

Sunday night I was feeling sad because of my hip pain and Sarah came over to me saying, “you need some vitamin P.” P for Panda of course. She gave me lots of kisses, hugs, and chin presses. Speaking of pandas, Sarah has been watching a certain episode of Daniel Tiger lately. It is about him getting hurt and going to the doctor. I was thinking maybe she wanted to watch it so often because she has had so many hospital visits in her lifetime. This morning I asked her why she liked the episode so much. She said “because of pandy.” That is what she calls the panda stuffed animal that sits on a couch behind Daniel Tiger’s mom in one of the scenes. 

Carl is in Canada skiing for a few days. As he was leaving for the airport, Amy said he was going to “Bananada.” Sarah picked up on the play and said he was going to “Pandada.” 

Next year, our little panda - currently in 8th grade- will enter her new high school as a 10th grader. I’m thrilled! Sarah is much older than her classmates at the moment because when she was very young we chose to have her repeat preschool for many years. It made sense at the time to keep her with her developmental peers rather than her age peers. But… that only works to a point. Even though she goes to a Catholic school that we pay for, there is a still an age limit. So for the next five years of school before she ages out, she can either have 4 years of high school and 1 year of the St. Anthony School program at Duquesne University (not a college program, but a post-secondary school program). Or she can have 3 years of high school and 2 years at Duquesne. It’s 5 years no matter how you slice it. When we visited her school for next year we were so moved by the warm welcome from some of the girls in the Resource Room. Those students will be 10th graders next year and it feels like the best thing ever that Sarah will join them, not just in the Resource Room, but for all of the mainstream classes that they join. There is the potential for her to have a friend group in a way she’s never had before. Possibly for the next 5 years. I know there are no guarantees, but having this possibility brings me a deep sense of peace.

When I told Sarah that she would be in 10th grade next year she hardly batted an eyelid. Perhaps because the news was eclipsed by the other news… she gets to wear pajama bottoms to school tomorrow! This week her school is celebrating Dr. Seuss week, which was normally only for the grades 2 and under. This year the school decided to extend the fun dress-down days to all of the grades. Wednesday should be interesting because that is career day. They want kids to dress as if they have some future job, and if they don’t want to do so then they can wear a regular uniform. But don’t tons of jobs just have people dressing in regular clothes? Sarah says she wants to be an Anat Baniel Practitioner. Which is great. And they just wear normal clothes! So hopefully Sarah’s school will accept her explanation. 

I just finished reading Life, Animated by Ron Suskind. It is about a family’s journey to connect with their son after he gets diagnosed with autism. He loves Disney movies and the lines from the movies became the words the family could exchange with him to have a way of communicating. It very much reminded me of The Son-Rise Program principals and goal - to connect through a person’s repetitive interest rather than shutting it down. It is an excellent book and I highly recommend it.

Last night Amy had a friend over to spend the night. I ordered pizza and we watched Mulan. Sarah stayed on the sofa until after she was done eating and then went upstairs. I haven’t figured out why certain movies like Turning Red or Inside Out grab her attention so thoroughly while others do not. What was disappointing was that when I went upstairs later she told me she felt phlegmy. This has happened occasionally in the past months, but I always felt like I could explain it away by looking at when she had dairy, blaming a possible culprit because I so much want to understand and have control. But her pizza was dairy-free. So, what was the culprit? It could be the tomato sauce and or the spice in the sausage and pepperoni. I also realize that this is the time of year last year when her phlegm issues started building, but I really thought we were in a stable situation of late. Last night I felt so sad and despairing. 

Overall lately I have felt so good about my life and really feeling that Sarah doesn’t need to ever change one iota. Generally society seems to have a perspective that people need to achieve and grow and participate in life in a certain way. But, why? Even if it is about bringing value to the world, Sarah already does that! She brings joy and connection to so many people and to me. This morning, perhaps on the tail of my despair about the phlegm, or perhaps because we snuggled for too long before getting breakfast so I was hangry, I was not feeling that joy and acceptance. I was just feeling blue that our conversations are still so simple and repetitive. It’s still so hard to know if the answers I get are true or if I’ve fed too much of a possible answer to her through my question. Anyway, now that I know she may read my updates later, part of me wants to never put in anything negative. But I also want to keep it real, because that is where all of us can come together in our shared humanness. Sometimes we have it all figured out. Sometimes we don’t. Sometimes the difference is a bit of phlegm and some hunger. It helps to write here and remember vitamin P. Clearly that is what I need more of!

Amy and I had a great day on Friday. She had a half day so when I got home from work we walked to a bakery. Then we watched an entire episode of The Great British Baking Show while eating a delicious treat. Then after Sarah went to bed that night we watched another entire episode! Normally we only watch 20 minutes at a time. It was so lovely to snuggle together and hang out for such long periods of time. Another wonderful Amy moment was when she “mailed” a panda picture from her Animal Tails Magazine to Sarah, addressed to Sarah Toad Wellington at our address, with the specification of “upstairs bedroom with pandas on the walls.” She also gave Sarah an invitation to her birthday party and Sarah enjoyed reading all of the details.

Lastly, after many attempts to dye my hair myself with varying results, I finally went to my hairdresser. It had been about a year since I last had a trim! So my hair is trimmed and dyed and I have no more visible grey. It is taking some getting used to, but I like it.

February 19: Valentine's Day and Not Needing to Stop Big Feelings

Monday was so warm that Sarah decided to wear shorts to her swim lesson, but since it was also not as warm as it could be, she wore boots. As Anna said, “at last, it’s shorts and boots weather!” Swim lessons are going well for Sarah, and I can now keep up with Amy in our races. My physical therapy and sessions with a trainer are making me a stronger swimmer. Amy alternates from nearly beating me in races to swimming like all sorts of animals - whatever I suggest. One of my favorites was when she swam as a chipmunk. Her feet were so fast and earnest.

We always begin our Valentine’s Days with cards at breakfast. The highlight of the morning was the panda valentine Amy made for Sarah using her watercolor colored pencils. I also made heart-shaped chocolate chip pancakes. Amy and her BFF dressed identically as much as possible, including each wearing two mismatched shoes so that they matched each other. I was amazed that they made it through the day without twisting any ankles. For her dress-down day, Sarah wore blue sweatpants with darker blue hearts and a white t-shirt with the St. Therese Tiger printed in red. She wears her school spirit shirts whenever she can and I’m only sad that next year the school mascot will no longer be a tiger.

Sarah wasn’t waiting for any package this week, but I still had times to practice how I responded to her screaming. (To be clear, her screaming about things is nothing new - I’m just exploring it in new ways.) As I have noticed before, if there is time pressure or if I offered something to be helpful and am met with sudden screams that seem unwarranted given the situation, then I do not handle it calmly. But, I still feel like I’m making progress with the other moments of screaming, allowing them to really exist without trying to change them in any way. On Friday when I picked Sarah up from rehearsal she was upset because one of her musical note hair bows that Anna made for her had broken. The piece that broke off was nowhere to be found. I reminded myself that I could just let all of her feelings be there as we drove home and before we even reached our door she had reached equilibrium. She also found it hilarious when she asked me how the panda on her wall felt about her bow breaking and I said it was bummed. Somehow, in all of my previous times of discussing the feelings of the panda picture on her wall, when I came with as many words for sad as I could (distraught, morose, glum, blue, blah, consternated, bereft, forlorn, etc) I had never said that the panda was bummed. She loves this new word.

Sarah also had some screaming sessions yesterday when she reached limits with technology. My initial reaction was one of resistance, but when I reminded myself that I didn’t need to change it and that she would be clearer afterwards, then I switched into feeling easily calm. Each one of these moments of feeling comfortable as she screams feels like a small victory, strengthening my emotional muscles to hopefully eventually be calmer in the harder moments. And… I also had times during the week of suddenly having intense feelings myself and it was such a good reminder that when those feelings come the most helpful thing I can do is cry. Affirming how helpful that is then leads me to more easily remember it when Sarah or Amy has sudden big feelings, knowing that they really just need to empty out their sad and I shouldn’t try to change it or stop it.

We are enjoying a wonderful visit with one of Carl’s cousins and her family. Countless games of Skeeball have been played and much laughter has been shared. Remarkably, last night Sarah went to bed two hours before the rest of us, somehow sleeping through all of the noise the rest of us were making.

Last night before our company arrived, when Sarah was upset about not being able to watch more tv, Amy offered that they could play together. Sarah responded that that was for babies. Amy was stunned and hurt. I was also rather shocked that such a phrase would come from Sarah. I wonder if someone said something to her at school or if it is a line from a show she watches. Because in our family we don’t have any judgements or age limits on what kind of things people play with, read, or do. And I’ve been incredibly grateful that Sarah and Amy share a love of playing imaginatively and being silly, because not everyone loves it so much. Sure, they are quite different kids in many ways, but I love that they can still play together easily sometimes. I think that will continue, despite Sarah’s one moment of lashing out against it. Both quickly recouped before the cousins arrived so I think yesterdays clash is far behind them already.

I’ve been slowly, painstakingly cutting words from my book draft. I used to be more than 20000 words over the limit. Now I’m only 16,489 words over the limit! Does anyone in the world of writing and publishing know if my title page should be included in that word count? It is currently. And what about my thank you section and important terms and concepts? Those feel slightly outside the main body of the book. And you can see I’m trying to scrounge more word freedom wherever I can get it! Yesterday, Sarah sat down with my paper draft and a pencil, circling many things as if she was my editor. Then Amy (with panda eye makeup) joined her, adding suggestions for new words such as “cats pie banana."

February 12: True and Easy Calm Amidst Screaming Sessions

Last night Sarah was reading the most high-level complex book I have ever seen her really read, following along with her finger and quietly saying the words out loud a bit as she read… it was the draft of my book about her! In my book I have a section about a time when some of us wrote books for her in varying levels of complexity. How meta-level wonderful if she now becomes a more focused reader of small print and long sentences because of a book about her. One could say this is just a longer book for her. Speaking of said book, I am getting ready to submit the required pieces to a hybrid publisher to see if they will be interested. That feels very real and exciting and also rather terrifying in its realness. I also need to shave a mere 20,000 words from the book as a whole. Luckily they don’t need the whole thing yet, but I still know their word limit. Yikes. I know less is often more and trimming will make it better, but…gulp. That means cutting more than just a word here and there. 

Despite writing about staying calm in the face of Sarah screaming, I actually continued to do so throughout the week. Often if I write about figuring anything out then I lose it and flounder around thinking that sharing about it somehow was a jinx. There were many more afternoon screaming sessions due to the anticipated Tigger watch not arriving until Thursday afternoon. Things that helped me feel truly at ease included !) knowing that I did not need to stop the screaming or change Sarah’s response in any way, 2) remembering that she would be in clearer, more present shape after getting her screams out, 3) realizing that she was actually doing a phenomenal job of waiting and being calm about it for most of every day. 

The times in the week when I didn’t maintain the calm I so covet were when timing was tight in any way. Sunday evening Sarah kept wanting one more minute in the bath and kept not washing her hair or letting me do it, and I watched the minutes tick away, worrying about how Amy would have time to shower before dinner and about eating dinner on time. I got so stressed about it and disappointed in myself for being tense that I had to go curl up in a corner and cry hard for a few minutes. But then I felt better and could remember that this is all a process. I also didn’t respond as calmly to Sarah’s upset about the watch when I did have somewhere to go and her upset included opening my desk junk drawer and wanting to go through it all in search of a watch. I didn’t scream but I was not easy-going. Luckily the Tigger watch did arrive on Thursday. Sarah was upstairs on her iPad when it arrived and didn’t hear me calling, “Toad! Come downstairs!” She likes to pretend to be Toad from a Frog and Toad story about waiting for mail. So I sent her a text saying, “Toad! Come downstairs!” It was a delight to hear her read it and run downstairs. Perhaps that moment helped her realize how texting can convey real information because yesterday during her zoom with Mom-Mom, Sarah actually texted some real words rather than just strings of gibberish.

Tuesday was so unseasonably warm that we had friends over for an impromptu pizza dinner on our back deck! The idea for pizza outside was hatched by Amy and her friend, although they wanted it to be at the pizza place near the park. I suggested that I order pizza from a place that has dairy-free options so that it would be better for Sarah and it all worked out beautifully. 

Swim lessons resumed after a month off while the pool was being repaired. Sarah and Amy excitedly donned their new tiger print swimsuits so they were matching tiger cubs. I put on my customary suit that is many years old and realized it is nearly disintegrating, so one morning I went to Target and survived the process of shopping for a new suit. I even found one! And I wasn’t too hard on myself in the dressing room, although I do wonder who wears the tiny things that barely cover a person. When a suit is on the hanger you can’t always tell how it will work when on you and I had many giggles of disbelief as I discarded all of the options that would look ridiculous on me. 

I watched part of a talk by Raun Kaufman and it helped me think differently about some of my interactions with Sarah. Raun is the original Son-Rise Program son and now helps many other families relate to their loved ones with autism in effective ways. Thanks to his sharing, I realized that I had forgotten to celebrate all of Sarah’s communication as communication. I hadn’t thought about how she might pick up on the times when I don’t want her to talk about a certain subject and possibly generalize. I mean, I know she knows that I don’t always enjoy her talking about hitting, but I hadn’t thought about the message my response might be sending overall about any attempts to communicate. So if I want to encourage her to talk more about her life in general, then that means appreciating every attempt at conversation, just as I did with her first attempts to say words. I signed up for a two day zoom class at the end of March with Raun and with Kate Wilde, another Son-Rise expert. They have a new venture called the Autism Crisis Turnaround and I’m excited to get refreshers and new ideas.

What most stands out to me about the changes in how I relate to Sarah’s screaming or some of her repetitive verbal patterns is that those changes don’t feel difficult. When I change my underlying thinking then it is like turning on a light in a dark room with an obstacle course. Where before I might have been straining to see and traverse the path, now the light is on and I can just see easily so of course it is easy to walk through. Because I am seeing it differently. I remind myself of this when I have moments that feel hard, reminding myself that I don’t have to strain and force. I just need to give myself time later to think about it so I can maybe turn on a light. And the more freedom I have to allow Sarah to have her feelings without needing to change them, the more freedom I might have for my own feelings without trying to shut them down or change them before they have run their course. 

One night Sarah wanted to talk about Amy’s upcoming birthday bash sleepover at Anna’s. Amy didn’t want to talk about it then because we were on a family zoom. Sarah started screaming, probably feeling anxious about the sleepover and wanting the reassurance of making plans. Amy was upset that Sarah wasn’t letting her talk (I can relate!). So they were both screaming and we were on the zoom and Carl was out of town so it was just me navigating the situation. I actually stayed mostly calm! I asked that the girls wait till we were off the zoom (momentarily) and that then they could scream at each other. We exited the zoom, and Amy still wanted to tell Sarah something. Sarah still had no internal space for that and just screamed more. I had Sarah go up to get ready for bed and I sat with Amy, listening to her tears and frustration. After her storm had passed I talked to her about the whole idea of how our beliefs influence our responses to things like Sarah screaming. I talked about my own thoughts and changes. She was very snuggly as she listened. I don’t know how much it will help as we move forward, but it felt like a good parenting moment. I wasn’t trying to change how she was feeling but I did want her to know that sometimes there are doors to freedom and we don’t have to feel trapped by Sarah’s screaming.

Lots of love to you all, and space for all of the feelings you may have in their entirety.

February 5: Screaming and Calm, Watches and Waiting

This week was Catholic Schools Week, so each day for Sarah was dress-down and had some special things at school. While that sounds fun, it may have contributed to her having some hard moments at school, especially as the week went on. She would get off the bus and report that she had been doing attention-seeking-behaviors. I bristled at the term and thought I should have another talk with her teacher and provide some alternate way of looking at things. When I did speak with her teacher, it did in fact sound like Sarah was wanting attention. Underneath that may have been an overload of excitement or sensory processing things, but I can’t be sure. I do appreciate that her teacher didn’t sound frustrated or judgmental of Sarah, she just wanted me to know more about what had been happening and get my thoughts. We agreed that it was probably the overload of the week coupled with times when it was assistants instead of the main teacher, because Sarah has an easier time of things with her main teacher. After two screaming meltdowns on Friday we decided Sarah should come home on the bus rather than staying for rehearsal. Although otherwise rehearsals have been going well. On Tuesday she even pretended to be the teacher leading rehearsal! As we left on Tuesday many kids wished Sarah happy birthday and it warmed my heart to notice how many kids went out of their way to wish her well. I so love the kindness of her school community.

Thursday morning Carl, Sarah, and I visited what will be Sarah’s high school next year. Sarah was delighted that we drove through two tunnels to get there. Her favorite parts of the school tour were the cafeteria and seeing a coffee/smoothie shop where she would potentially work. My favorite part was when we first arrived and were waiting in the Resource room for the 9th graders to return from their mainstream class. One of them has been a friend of Sarah’s for years and they have done some camps together. Another was new to us. And the third had been in Sarah’s Resource Room for the past few years. When that third student entered the room and saw Sarah her face lit up into a huge smile, she dropped her notebook in delighted surprise, and gave Sarah a hug, saying how much she had missed her. Carl and I were immensely moved by such a warm welcome. Then all three 9th graders gave us a tour. Sarah is excited about her new school and we decided we don’t even need to tour the other possible high school for her. We want her to be with this group of kids.

You know Sarah loves watches and you know she loves tigers, so it is no surprise that she wanted to spend her remaining Christmas money on a tiger watch. However, you also probably remember how she doesn’t handle waiting for deliveries particularly easily. On the one hand, I could say she has immense patience to handle it calmly for most hours in a day. But, then the waiting is too much. Especially when she expects that the watch will have arrived while she was sleeping or at school. So Thursday and Friday when she got off the bus she immediately launched into prolonged (at least an hour) screaming.  Her lungs have certainly gotten a screaming workout this week!

I, however, did not get my feathers ruffled by it. Monday, Tuesday, and Thursday I took a zoom class through The Option Institute called Emotional Fitness Training. It was an intro level class so covering everything I learned when I attended an eight-week program there during college and what I learned with my Son-Rise Program Training. However, just because I have learned something once doesn’t mean a refresher isn’t incredibly helpful. I struggled a bit during the actual classes because I can be very hard on myself sometimes if I’m feeling unhappy while mightily trying to swing around to seeing that I have a choice in the matter. I so much want to leap to the end result of feeling happy. That said, I had a notable moment Thursday morning as we were preparing to leave for the high school visit. I had thought I left ample time for all of us getting ready, but in the end I was all stressed and worried about being late and frustrated with family members. And then I was extra stressed and frustrated as I went to get in the car because my phone rang and I tried to answer it but it was already playing in my car, as I was standing outside saying “hello” while the caller couldn’t hear me. All was eventually settled, and we were on our way, but I then started judging myself for getting so flummoxed. Then. Then I paused and decided not to judge myself for having gotten stressed, but to be there for myself in that moment, not running away from the feelings. And I instantly felt like I could breathe. I hadn’t realized how often I actually abandon myself in those moments. Later in the day when Sarah needed to scream a lot, I just decided to take care of getting myself a snack and doing what I needed to do. I wasn’t giving her full attention but neither was I totally ignoring her. It felt like I was in the middle, with no need to make her stop screaming so no tension within myself about the screaming. I was able to repeat that Friday afternoon and yesterday morning. I know I might not always be able to be in that zone, especially if there is time pressure, but this felt like a huge breakthrough. As if I could really and truly separate us out as being two different individuals. The upside to all of the screaming sessions is that when Sarah has been clear and happy she is extra clear and happy. 

Wednesday night she and I had a delightful bedtime tuckin time. She loves talking about pandas and that led to talking about bamboo and that we saw it at the zoo. Then I said that Mom-Mom used to have bamboo in her backyard but then wanted to take it out. Taking it out was a huge ordeal. Sarah cracked up, pretending to be Mom-Mom trying to get rid of bamboo and saying, “Ugh! All this bamboo!” Sarah’s expressions were hilarious and she loved that I commented on them. Now she pretends to remove bamboo and tells me to look at her expression. 

It is interesting to feel like she had a rough week while I did not. Usually if she had a rough week then I did too. 

Amy has been flexibly accommodating around the bathroom, letting Sarah go in first even if Amy was on her way there. She knows that is the path to more peace. Sometimes Sarah still yells and bangs on the door, but sometimes she waits easily in the hall. She is waiting for Amy to be done rather than waiting to use the bathroom herself. Sometimes when Amy comes out then Sarah runs to open the door fully, usually quickly and with a bit too much force so we need to repair the plaster on the wall (despite the door stopper). At least once, Amy had Sarah practice a do-over moment to be slower with opening the door. I was quite impressed with Amy’s calm about it. One thing Carl and I noticed more this week though was the connection between Sarah feeling criticized by Amy (even if Amy just said, “maybe next time you could”) and Sarah getting super agitated. Sometimes Amy is frustrated with Sarah and so her tone isn’t so calm and her reactions not so flexible. I totally understand and can relate, but it was interesting to see it more from the outside and notice the direct correlation from Sarah moving from hanging onto her calm to losing it.

I hope you are all well. If you need to scream, may you have all the space and time you need for your screaming. Or if someone needs to scream near you, may you continue to take care of your own self.