January 27

There were a couple of moments this week with Sarah not moving when I wanted her to move. It was as if she was a stubborn mule stuck in some mud. The most frustrating of these moments was when I was in a hurry. Kids can smell hurry the way animals smell fear. So it wasn’t the best moment for either of us, especially when we were finally on our way to get Amy but still haltingly and slowly. I yelled loudly. Then I looked over and noticed my friend on his way to get his daughter, who is Amy’s best friend. I felt a bit embarrassed to be observed so much at my limit. The wonderful thing was that my friend just came over to join us, offered to share his clementine, and walked with us the rest of the way, listening to me vent, with no judgement. That was very kind and very helpful and I hope I can do the same for someone someday. I think for future moments when Sarah and I get so stuck I really need to force myself to go elsewhere until both of us can change our energies. The tricky thing with this is that usually time is exactly what we don’t have. Except maybe we do. I know that time, being on time, not wanting to be late, etc is one of my big challenges for keeping my equilibrium, so probably there is much more flexibility than I perceive in most of these situations.

This coming Thursday is Sarah’s 12th birthday. Her party was yesterday at a bowling alley and it was a success. Sonia, Grandma, and Grandpa were there to celebrate and were also a huge help. Sarah loved the bowling part so much that she was extremely upset when it was time to eat and play arcade games. She ended up screaming and crying on the floor for a bit. The room was just for her party and I knew that everyone in attendance knows Sarah pretty well or has a child who might have a similar moment, so that was ok, and she did end up enjoying the rest of the party too. 

Sarah had been asking for a Rizzo the Rat cake and I had no idea how to make that happen. Saturday morning I was inspired to use part of a cake that Sarah made on Friday (no recipe, just some guidance from me) and the cake and cupcakes that I made to assemble a Rizzo head and part of his body. Previously I thought I would have to draw him and I didn’t anticipate success. Making a large Rizzo with cake pieces worked beautifully and she loved it. He had a yellow sweater with lifesaver buttons. His eyes were chocolate covered almonds. Cupcakes served as ears. I cut a triangle out of one cake to put on top of the full circle cake that was his face so that his nose was above the rest of his face. 

I was impressed with the thoughtfulness of some of the presents Sarah received. They were items that I wouldn’t have thought to get even if I had seen them, and yet she loves them. She got a sequin drawing board where you flip sequins over to change the color. She spent hours playing with it. She also got a Cabbage Patch baby doll. When she opened it, Carl laughed at how excited I was. I used to have one when I was little, though mine was slightly different. Still, it is adorable and Sarah has taken to it way more than I ever would have predicted. She carries it around, gives it chin presses, puts it to bed, and has named it after Grammy (using Grammy’s real name). As to be expected, she has been wearing her new striped capri pants since she put them on yesterday afternoon. As usual, Amy has been having a bit of a rough time witnessing Sarah getting all of the presents. I do have some things for both of them for Thursday. It took me a few years to learn that having a few items for the non-birthday girl really helps. While birthdays are a good time to work through jealousy, it is ok to take the edge off a little bit.

I always feel a mess of varying emotions when it is Sarah’s birthday. Yes! wow! 12! Yet, so much not a typical 12. So much still in toddlerhood with some things, like complete stubborn recalcitrance and tantrums that include banging, throwing, screaming, and slamming. I realize that many people do these things throughout their lives and I am not innocent on that front. But I am weary of it. I am judging it and feeling like we should be past it. Such an outburst happened just a minute ago. While there have been many moments when I could remember that she just needed to have a crying screaming session to get her feelings out, in this moment I didn’t remember. I just felt mad and that I couldn’t understand her. Then I felt about two inches tall. Sarah is still having moments at school that mean she doesn’t join the regular classes. At the end of the school day on Friday her teacher had to give her a shirt with no buttons because Sarah was putting her buttons and zipper in her mouth, escalating all of the things she was being told not to do. Doesn’t she understand how much more easily everything would go if she didn’t escalate the behaviors she knows not to do?? (You could ask the same of me, even if the behaviors are different.) Why can’t she just do school better? Why can’t she just cooperate more? What am I not doing or seeing that would make this better? I know last week I somehow had some wisdom about choosing a different story for myself, choosing that I do have energy for all of this, but right now I don’t. Right now I just feel drained and done. It has been a hard 12 years. An absolutely amazing, life changing, profound, phenomenal, filled-with-the-best-people 12 years. An inspiring, miraculous 12 years that fills my heart daily. But also a ragged one at times. How do these realities coexist in me? is us? I suppose the underlying thing to remember is that sometimes I’m the one that needs a good cry and maybe more sleep, more water, and better food, and forgiveness. I hesitate to share all of this, feeling like a broken record about all of it, but it is also how things are at the moment, and this is my way of remembering my moments. I realize now that I’ve been writing weekly about our journey for over 7 years. That is rather staggering. We have had Sc. doing SR time for 7 years. G. has been with Sarah for almost 9 years. How are all of these large numbers possible? Yet, how not? These wonderful, amazing people are part of our family now, giving their time and love to us all for so many years. I know we are incredibly, deeply blessed and that Sarah has been the cause to find the path to the blessings. So in the big picture everything is really amazing, even if sometimes the road feels muddy and mucky and that I want to stop. I don’t really want to stop. Maybe I just need to have it all be ok and not feel embarrassed about the tough times, as if somehow I shouldn’t have them. Anyway, here we are. Depending on Sarah’s interest of the moment, that is how we describe ourselves when we are off-kilter. We are either on the wrong bicycle, the wrong ball, the wrong bamboo patch, the wrong litterbox, or as Amy said this morning, Sarah and I were eating the wrong cheese! We were! We had a moment of delighted laughing as we celebrated no longer eating the wrong cheese.

Sarah has always had is a sparkly spunky sense of humor and play. Yesterday, Amy brought out Twister and Sarah said she wanted to invite her friends to play too. She asked the kids printed on the box to come play. Then she had the box walk over and move around the board. That was entirely her idea. 

Amy and I have been watching the “Annie” movies, both the most recent and the original. I loved the story when I was little and I love it still. When I was little I had a locket with an Annie doll that I lost in a campground and have looked for ever since. Recently I looked on ebay and was astonished to find that I could have the very same locket and doll, brand new. Of course, now I don’t want it. Plus, I enjoy having something to look for at the camp ground, despite the now-realized fact that I had no memory of what the doll looked like. That seems like a profound analogy for life, with all of us searching this life campground for something we lost but we don’t actually remember what it was so how are we really going to find it? And maybe now we want something different and we already have it but don’t fully appreciate the fact because we are still looking down for the lost thing.

May you have someone kind to bring you company and a clementine, may you remember what your lost doll looked like, may your friends come to play, and may you eat the correct cheese!

January 20

I’ve been thinking a lot about the line between discerning how I am truly feeling vs keeping myself stuck in a story of things being hard, thus perpetuating things feeling hard. Maybe it isn’t really a line. Maybe it is helpful to ascertain how I am feeling so that I can make different choices about my actions or thoughts and thus bring about a different experience. Deciding that I’m not too tired and not burned out has been helpful. There have been many moments when I have easily reminded myself that it is good if Sarah is having feelings. It is good to give her time and space to clear them. It will help us have an easier time later. Making a different choice about how to feel about Sarah’s upsets is sort of like choosing to brush my teeth with my non-dominant hand. It takes a moment of presence and reminding myself but then it is usually easy. 

Yesterday morning Sarah had another long crying session about it not yet being time for her bowling birthday party. Carl was the listener but I felt at peace with hearing her upset in the background, with no need for her to be done. Much later she was very helpful about loading the car for a short trip. 

I’ve been reading The Mother-Daughter Project by SuEllen Hamkins and Renee Schultz and asking myself the book’s query: what do I need as a mother to support me in being the mom I want to be? Recently, after a full day of mostly just Sarah and me, I found myself yelling at her for spilled milk. Yes. You read that right. When I asked myself what I needed the answer was “a break.” Not that it had been a particularly hard or taxing day, but the change was in asking myself what I needed and hearing the answer with relief instead of judgement. Then I did get a short break. The question helps me honor my choices to rest or keep a clean house or get a massage or ask for help as truly important parts of being the mom I seek to be. It is like learning how to care for an animal and what it needs when. It’s just that the animal is me. 

Amazingly, it seems like Sarah can eat baked dairy!! Since the time of accidental goldfish consumption, I have purposely given Sarah cheddar bunnies on several occasions. I have used cow milk in some baking. She seems to have no reaction! I bought some Nilla Wafers to try next. Not that I want her eating a ton of processed foods, but it brings me joy when she can know certain tastes and experiences every once in a while. 

Gymnastics is still a bit of a struggle for me, which is why we often have Carl go instead. When I go, I have to remind myself that the time is finite and that my goal is to stay relaxed and in good connection with Sarah. We managed mediumly well yesterday. 

I’m not sure if there is anything better than blasting “Let It Go” from “Frozen” and having us all sing along. I love that Amy now loves the movie and the songs and wants to be Anna.

Amy is a new Brownie and is selling Girl Scout cookies (for a limited time). If you want to buy or donate some cookies, you can go to https://digitalcookie.girlscouts.org/scout/amy112560. Amy loves being in the group and it is something she does with Carl, who is an assistant leader with her troop. She has been clear that it is not my place to do Girl Scout things with her.  The only difficult part of her Girl Scout experience so far is that the meetings are on some Tuesday evenings at the same time as Sc does her SR time. While SR time was originally just with Sarah, at this point it is with both girls. Amy is often heartbroken to leave the special play time early even though she knows it is for something else she loves. This week after dinner she popped up to tell Sarah and Sc goodbye. She came down in tears, throwing herself into my arms and saying that was a big mistake (to say goodbye) because they had just made a castle fort and she was so sad not to get to play in it. 

We discovered a new game that Sarah loves. It is called Paku Paku and it involves throwing dice and stacking tiny dishes and saying “one two three Paku Paku!” and “Paku stop!”  All of this has Sarah laughing delightedly. 

May you laugh with delight and sing your favorite songs, finding new paths if you are weary of your old ruts. 

January 13

Sarah had her annual audiology evaluation on Friday. The good news is that her hearing is about the same as it was a year ago. She has moderate hearing loss in her left ear and minimal loss in her right ear. This means it is still optional to get a hearing aid. That has been something I resisted in the past, but now I am thinking it may be worth the annoyance of paperwork and extra appointments to at least have one for her. Even though technically her right ear is strong enough to do the job for both ears, I wonder if she would have a better/easier/more focused time in school if she could hear perfectly. The annoying paperwork is because insurance won’t cover the hearing aid so the audiologist said I would need to apply for medical assistance. 

Sarah had a good week at school. On Friday she joined her neurotypical peers for 15 minutes of Science class and 15 minutes of Religion. What her primary teacher does so beautifully is to take her for the last 15 minutes of class so that when that time is done it is because the class is over, regardless of Sarah’s behavior. As Sarah is able, they increase the time. 

Carl and I were each independently noticing and inwardly celebrating how much Sarah and Amy play together. This morning when they woke up they stayed in bed singing a song they adapted to be about Rizzo the Rat. 

Yesterday we tried snow tubing. Sarah and I each went once and that was quite enough, thank you very much! I need a slow lazy-river type snow tubing experience. Amy screamed the whole time but loved it. She and Carl went twice and then the hill was closed for maintenance. For all that Amy like it, I did notice that afterwards she had no reserves to deal with disappointment. Something minor didn’t go as she wanted and she was a pile of intense tears and general disgruntlement for a long time. My guess is that part of that was due to the heightened adrenaline of the tubing, combined with being hungry. 

Sarah is desperately eager for it to be her birthday or at least the day of her party. Yesterday morning she had intense screaming and crying about that. My mom must have temporarily inhabited my body because I was completely calm and relaxed about it and had as much time and space as Sarah needed. So often I fight the fight or walk away from her screaming. It is lovely when I remember the healing power of a good crying session and truly have the space to honor it and witness it. After her session, Sarah took a nap. When she awoke she told me she was feeling better after her nap. Then she asked again to go bowling (her party is at a bowling alley). I said no, but this time she didn’t get upset. 

Love to all of you. May you hear what you need to hear and have space for any and all feelings. 

January 6

Overall our whole trip to MN and WI was really really really wonderful. That said, there were two tiny but very intense moments of difficulty with Sarah. Both were at moments when it was time to leave one place and go to another. One was to go to the memorial service for her great grandfather. One was at a train station when we needed to get on a train. It was like parenting a three year old again and yet she is about to be twelve. She was throwing herself on the floor, yelling, spitting, shoving her hand in her mouth or then switching to a fake giggly laugh that is really not present. I felt deeply despairing and like giving up. I felt like a Son-Rise failure and like I should run a program again, but I feel exhausted to my core when I think of that. I don’t want to do it. I felt worried that I might give up on her and that she and I will not have a good relationship going forward, which would break my heart. And yet I just felt so mad at her and so done. It was awful. The fighting moments were brief but my exhaustion and feelings pertaining to them lasted longer than they sometimes do. It took a few good, hard cries and some work to shift my thinking. I could begin to see that we do still have the majority of our moments together as either good or just somewhat challenging. We still love each other. She handled the majority of the trip with ease and cooperation and her usual level of independence. So we are ok. We are in good shape. But that was exhausting.

With a sample size of two, I clearly am ready to publish a paper on my findings… twice now after an intense moment with Sarah (once a few weeks ago and once on the trip), I got a cold that same evening. Some might say that I was going to get the cold anyway and that my reserves were thus reduced for handling a tricky parenting moment. I believe that when I deplete myself so intensely, through the fear, anger, desperation, yelling, exhaustion, and feeling like a terrible mother, then I compromise my immune system and am vulnerable to illness. In both cases I have been able to work mightily (like turning a truck) to reverse course on any thinking that keeps me feeling awful. I strive to feel good about myself and Sarah and life. In both cases my cold has been mild.

Sarah’s new favorite movie is the Muppet Christmas Carol. This is one of my favorites too! She especially loves Rizzo the Rat. She has now changed from pretending to be a sad turkey or cat to being a sad baby rat. Her sad baby rat says, “Squeak, squeak, cheddar, cheddar, cheddar.”

For Christmas we got a kids’ book about Temple Grandin. Yesterday I read it to Amy when it was just the two of us in the house. I ended up talking to her more about Sarah and autism. Sort of generally and sort of specifically. As usual, Amy seems to take it all in stride. I present it in stride, which probably helps.

Amy had a sleepover on Friday night. This meant that when a neighborhood friend invited Sarah and Amy over to play, Sarah was the only one available. Sarah hasn’t ever had a playdate on her own since she was so little that I thought of it more as the other kid’s parent babysitting. This felt momentous. She zipped her sweatshirt and grabbed a book, heading off on her own to walk around the corner to her friend's house. This is a friend I have mentioned before. While many kids seek to include Sarah somewhat when they are around each other, this friend seeks Sarah out. On purpose. Sarah’s differences don’t phase her. When I asked the parent if they had actually played together, he said yes! He could hear his daughter directing the play to be about school. Given Amy’s penchant for directing and playing school, I can see that it probably worked well. Sarah can benefit from a strong leader, but she also won’t do something she doesn’t want to do (see paragraph 1!). Then I had an epiphany. Maybe Sarah is much more ready for peer playing than I thought. She just needs a peer she is used to and who doesn’t hesitate to grab the reins, doesn’t hesitate based on any of who Sarah is. Within the context of this amazingness, we learned a good lesson and maybe some freeing information too. When I arrived to get Sarah, she was snacking on goldfish. I hadn’t thought to say anything about food because she just had a snack before leaving home. I am also so used to Amy being around to say something, which I realize is a responsibility I shouldn’t place on her. I also thought Sarah would be better about taking responsibility for her own allergies. She knows she is mildly allergic to cow milk and that it will make her itchy. However, there she was with her goldfish. So I have learned she needs more practice in taking responsibility for her eating choices and allergies. I have learned I should always review her allergies with the supervising grownups in any situation. I have also learned that maybe she is actually ok with eating goldfish! She didn’t get itchy at all!!! I have heard other people say sometimes baked dairy is ok even if non-baked isn’t. So I think we will experiment a little.