July 29

Thanks to the help of sitters hanging out with the girls at home, on Monday I drove to the Poconos to see my two best friends that I’ve had since I was 4. These friends are sisters to each other. I remember when I met them I thought, “oh finally, these are the friends I’ve been waiting for.” Up until meeting them I certainly had friends, but not best friends. It was wonderful to see them and we laughed a lot, as usual. We took a Zumba class and a Pilates class that focused on legs. The latter made us wobbly on the stairs and we laughed till it hurt. I think my muscles have finally recovered. The drive home Tuesday afternoon was unfortunately one of the most stressful drives I’ve ever had. It was rainy, foggy, and misty so there were times when visibility was awful, but I had to keep going because it clearly wasn’t going to blow over quickly. I did make it home safely and I look forward to making similar trips in the future, trusting that the weather was an anomaly.

Wednesday morning was not my finest parenting moment. We needed to get the house clean (as in: putting crap away) and Sarah was not wanting to help. Sometimes the girls are great helpers and sometimes they aren’t. Sometimes I handle their lack of help gracefully and sometimes I don’t. This time I didn’t. I yelled a lot. I did my equivalent of whining. We were able to reset later and had a pretty good day overall. We got groceries. We walked to the Square Cafe for lunch. I took the girls to the pool. I talked to my mom. Somehow, amazingly, my mom always has kindness and love for me even when I am at a low point. I think I need to substitute her voice and the voice of the girls’ piano teacher for my own internal voice. Both seem endlessly patient and kind. 

Friday and Saturday nights we went camping in our backyard, complete with a campfire, s’mores, and our tent. 

Sarah and I had some nice snuggly moments when she was pretending to be baby Sarah. I invited her to do this while I apologized for yelling at her regarding roasted-marshmallow-removal safety protocol. I explained that I get scared about her getting hurt, and that I am aware that yelling isn’t a great way to show love, but my fear about her safety does originate with my love for her and my desire to protect her at all costs.

Amy moved up a level in swimming! She is now a Shark 1. Sarah has been a Minnow for almost a year and I don’t see that changing anytime soon because she is still scared of floating completely on her own, and she is scared to jump in without holding a hand. When it was her turn to jump, I called out some encouragement to her. Amy did too. Soon the other parents and the lifeguard were also cheering for her. Eventually she jumped in holding her teacher’s hand. It still felt great to have so many people rooting for her. That’s really how her life has felt overall. There are so many people rooting for her and believing in her. I truly believe that eventually she will jump in and float independently. It just may take a few more months or years to get there.

Amy found out what classroom she will be in for second grade. When she learned that one of her best friends will be in the same class she was so excited that she ran around the whole house yelling and whooping. 

Last night Amy sang a song with a bubble container as her microphone. Sarah drummed a beat on our elephant watering can and participated in the song when Amy would ask questions as part of the lyrics (such as: “what camp do you go to?”). It was an amazing little moment. I know I can’t stand it when the girls fight as often as they do, but I also truly marvel at how perfect Amy is for helping Sarah learn and grow. Amy’s creativity is seemingly endless. She is always playing and inviting Sarah to play (or yelling at her not to).  Probably Sarah is perfect for Amy too because she doesn’t let herself get bossed around, which I guess is the positive spin for how she so often doesn’t listen.

I made really good popcorn. I added a splash of maple syrup to the olive oil in the pan with the kernels. It ended up tasting a little like kettle corn. We snarfed it all.

I feel like most of my updates could be summarized as “I wasn’t always the parent I wanted to be, but we had good times, and sometimes the girls are amazing.” So there you have it.

July 22

Parenting is hard. Luckily there are moments that fill my heart so much it hurts with joy. 

This week I have really struggled sometimes regarding Sarah. She so often ignores what I say, purposefully continuing with what I have said not to do. I know that kids do this, but Sarah does it waaaaaaaaaaaaay more than Amy does. Sarah also does it with things related to safety and that is when I really tend to lose it. A small example is when she was holding her shoes in her hands and pressing the soles to her face. I said not to do it. She asked why and I explained. She continued to do it and the situation escalated until I screamed at her and then she stopped. Last weekend Sarah touched the waffle maker before it was cool and burned her finger. She was understandably quite upset and cried for a while. This weekend we reviewed the rules about not touching the waffle maker unless she checked first with a grown-up. Time passed. Luckily it was cool when she touched it, but we saw her do it and so reprimanded her for it. In her frustration she then pressed her chin to it, because that is her sensory pressure of choice when happy or upset. Since it was no longer hot this was ok and safe but we were so frustrated that she would do such a potentially dangerous action. In my head sometimes lately I want to scream at her, “what is wrong with you?!?!” While it often can feel like I have no self control regarding yelling at her, I do restrain myself a lot and I never do ask what is wrong with her. That crosses a line that I hope never to cross. It still feels reprehensible to even think it or feel it at all. This paragraph feels like picking up the rock that is my parenting and showing you the underside, crawling with worms and bugs.

Now for the view from the top of the rock, worms and bugs safely hidden…This week had a lot of wonderful and amazing moments where I really enjoyed my time with the girls, marveled at their progress, and couldn’t believe my good fortune that these beings exist and are mine.

Sarah and I had a wonderful SR session where she started pretending to bake a cake from the book Thundercake and we talked about each step and sang “Happy Birthday” after she put in the requisite number of pretend candles. She let me sing an alternate birthday song too. The whole thing felt connected and her eye contact was sparkly and joyful.

We went to a splash park playground one day and a fountain play area another day. We went to Idlewild with the help of our sitter E. Sarah spent hours, yes hours, in the ball pit. Amy tried the ball pit and was furious that it wasn’t fun and that she couldn’t move through the balls with the same ease she has in our home ball pit. She ended up doing several other things that were fun, but the beginning was rough. Hell hath no fury like an Amy who expected fun and was disappointed.

The girls wanted to camp on the living room floor so I used long plastic rods balanced on the chairs and couch and covered with sheets. They loved it.

I took them grocery shopping with me for a real-sized grocery list instead of just two things. They did wonderfully. I was pleasantly surprised. 

Sarah and I walked to a cafe that I used to think might be too far away for her. She did beautifully. She kept a faster and steadier pace than usual and with much less pausing than usual. We had an easy time together.

Carl, Sarah, and Amy played a game together where they took turns with who was the doctor, nurse, and patient. Apparently during one turn someone ate orange bamboo and got sick.

I have been feeling incredibly grateful for our crew of sitters and SR volunteers. It is amazing to have so many individuals who are so creative and loving towards all of us. Our lives are so much better because of them. Each and every one is unique and stunningly wonderful. I love that the girls love them so much. There was one day this week when we didn’t have a sitter or volunteer coming and Amy was disappointed, wondering why I hadn’t arranged something!

There were some playdates here this week, one with neighborhood kids and one with two of Amy’s friends from preschool. I marvel at our amazing neighborhood community, where multiple kids come over asking if Amy and Sarah can play. They seek to include Sarah often. They are comfortable with who she is. They teach her games on their phones. When Amy’s preschool friends were here, Sarah didn’t join them much, but when she did it was more harmonious than it has been in the past. Maybe everyone is getting older or maybe it was just luck. I realize that with both playdate situations this is exactly the thing that can help Sarah be more comfortable with peers. The kids mainly come to play with Amy but then Sarah ends up being immersed in play dates and immersed in peer contact with kids that are super familiar. With Amy, Sarah can so easily play and engage and join in activities. With other kids that usually doesn’t happen, but maybe it can start, especially with the small neighborhood crew. I love realizing that we are already in the situation we need.

Thanks to Sc, Sarah learned a new word to add to her repertoire regarding sadness. Last night she giggled and smiled while telling us she was feeling forlorn. This was right after she donned her sitter C’s shoes and was saying she was a clown with a red nose and clown shoes. We were all truly laughing and enjoying her humor. I was almost in tears with laughing at her use of “forlorn."

The biggest highlight of the week was Amy riding her bike by herself with pedals and no training wheels! It has been a long time since she rode her balance bike or her training wheel bike. Carl took her out yesterday and in short order she was an independent biker. Amazing. She sang a song that just makes the whole thing so quintessentially Amy. The song lyrics are, “I’m riding my bi-ike, all by myse-elf, with my pedals, whoa-o-o-o.” Carl recorded her and I have watched the clip countless times. This is one of those moments where my heart is so full of joy it feels like it may break.

Remember that there are two sides to your rock.

July 15

I don’t think I really have much for this week except the humbling awareness that I’m not very good at being relaxed if the girls are helping in the kitchen. I’m also in awe of how Carl can be ungrumpy with whining kids or problems to be solved. This is how he is in general but also after a full day of work. Or after a full day of being with the girls after I was gone all day teaching. I can have a ton of time away from the girls and then still be grumpy on a moment’s notice. 

Sometimes I think a part of my grumpiness with Sarah is because I so completely believe she can do better. I know she can learn to wait more easily and whine less. 

As I write, I marvel at Carl patiently letting the girls help him make waffles. I’m hesitant to see the mess but I’m impressed with Carl’s calmness even when averting small almost-disasters. He’s teaching them things. I think it is clear who should teach the girls to cook and it’s not me!

I wish you all the support of someone who is better than you in the struggly spots. It’s the best, even if humbling. (I also know that sometimes it goes the other way and that some things come more easily for me. Carl and I are a good team.)

July 8

I reevaluated Sarah according to the Son-Rise developmental model and the ATEC autism online test. Unsurprisingly, she had moved quite a bit. Both evaluations are subjective given that I am the one interpreting the questions. Still, it is pretty amazing that two years ago she was just edging into stage 4 for the SR developmental model (acquiring everything in stage 5 is as high as you can go) and now she is middling in stage 4 and more than edging into stage 5. A year ago her ATEC score was 36 and now it is 27. That is amazing. The lower the score the better. 

Last Sunday we had a lemonade stand. We squeezed lemons and mashed raspberries for pink lemonade. Amy made signs. I probably helped too much with the whole thing especially serving the three customers who weren’t us. Still, it was delicious. 

Amy taught Sarah to play go fish. It will probably take several more rounds before Sarah can do it without lots of coaching. They do it with their cards showing, just as Amy and I did when Amy was first learning. 

With the help of sitters, we went to the Children’s Museum and the History Center. Each field trip was followed by ice cream at Millie’s, a place that is new to us, amazingly delicious, and has vegan chocolate ice cream that Sarah can have. Sc took what is now my favorite picture of the girls together, laughing and holding hands after enjoying their ice cream. 

People sometimes ask me how I found volunteers for our SR program. I explain that I sent emails to friends and did various other networking. I asked friends who worked in the drama departments of CMU and Pitt to forward my email about Sarah-Rise to their students. I expect many emails went out. I got one reply. But that one reply made all the difference. That one person, A., was extremely involved and enthusiastic. He worked with Sarah multiple times a week and spent time with Amy so I could be with Sarah. He also told his friends about us and three of them volunteered too. One of those friends is Sc, who is still an incredibly important part of our lives and still does SR time. So you never know what can come from just one person. This week we had the amazing gift of a visit from A and his band, Bandits on the Run. I highly recommend their music. They gave us a private concert and it was absolutely amazing. Some moments are just the best. 

It was wonderful to see the girls greet our guests and want to show them all of their things and skills. When A was with us, Sarah had just been starting to talk so she has really come miles since then. She also showed everyone her Sad Brow book, of which A is a part. She named everyone as she went, including people she hasn’t seen in many years.

Another day, Amy made a car with poles and connectors, a chair, a ramp, a pool noodle seatbelt, and sketch book pedals. She also wore a helmet to insure safety. 

Carl took the girls on a short bus ride and just before getting off, Sarah stopped to tell the driver, “bye! Have a good summer!” 

Sarah still likes to play restaurant so I gave her a notepad and pen to take my order. I also brought up our fake food bin and Amy brought up playdough. Doing the SR developmental model is a good reminder to keep building new ideas upon any original idea.

Amy had her first sleep over that was away from home. It went well!

We are on vacation right now. While vacation often means a relaxing time, I will say that along with some wonderful times, vacations are also quite challenging for me and I have less space to handle the whining and impatience. But...some highlights include the girls going on a small rollercoaster with Carl. Amy even went a second time all by herself. They enjoyed the waterpark and Sarah even tried two water slides after watching others for a long time. Sarah loved the lazy river, until she tipped too far back on her float and fell in the water. She got back on her feet but was upset for a long long time after. We had a good time eating at Sara’s restaurant (a real one). And Sarah navigated to the downstairs hotel bathroom all by herself this morning just by following signs. We didn’t go with her and she did the whole thing and came back to us independently. 

I continue to marvel at how my girls can be so grown up and so small at the same time.  So capable and so clueless. So annoying and so adorable. The snuggles and love are still there is spades so that is the most important part. When Carl came back from a short run this morning, they greeted him as if he had been gone for a week, climbing on him with delighted joy. 

Lots of love and delighted joy to all of you, even if there are moments of extreme frustration. 

July 1

Summer camp is complete, so now I really feel like we are on summer vacation. Both girls had a wonderful time. I enjoyed still having some kid-free hours, but I won’t miss sitting in traffic. I did over two hours of driving per day to get Sarah to and from her camp, some of which always involved sitting in slow-moving traffic.

Most days the girls applied their own sunblock easily and without complaint. If you have ever witnessed our history with sunblock then you know this is a small miracle.

Yesterday we went to the rally to support immigrant families being kept together in the first place and reunited if they have been separated. This was the first time the girls ever joined a march or rally. Since Carl was out of town I enlisted the help of one of our sitters/friends. Her presence was really important for my mental health. We took the bus there and back, which was an accomplishment in and of itself. I don’t take buses often so to figure out when and where I am supposed to be is an achievement. I had thought I could use my bus card for all of us but was informed I couldn’t. Once we got to the rally, the girls immediately started wilting in the heat and complaining about it. It was over 90. I plied them with snacks, snacks, and more snacks. We saw some friends. We heard a counter-protester. We left. Basically, as soon as the snacks ran out, we left. Still, now that we have done one of these and survived I think I will bring them to future marches and rallies. I had promised the girls that we would get frozen yogurt afterwards so that is what we did. On our drive to fulfill that promise, Sarah asked our sitter a question and prefaced it with her full name, “C___W___, what flavor are you going to get at the frozen yogurt place?” While it is no surprise that Sarah can speak well, sometimes she puts new sentences together so fluidly and clearly that my jaw still hits the floor. This was one such case. Perhaps you heard my joints cracking as my mouth tried to open wider than it could. In general I feel like Sarah’s speaking is crisper and more fluid and plentiful. She is also much clearer and fluid with reading out loud, which usually is more challenging for her than just speaking. The challenge seems to be falling away. 

One day when I picked Sarah up from camp I thought that she looked older. I could really believe that she is going into fourth grade. It seems right. A day later, G. commented that Sarah seemed to have grown up just in the past week. (As I reread these sentences I feel all this qualifying surge forth…it’s not really fourth grade. Well, it is, but with lots of help and she is still in a special room most of the time and she really is more like a kindergartner or first grader in terms of her academic skills, and she still whines and yells so much about little things… as if somehow with all of my sharing of her growth I need to make sure you know that we are still working to grow more and that parenting her is still hard sometimes.)

The rest of yesterday after the rally involved naps, electronics, pizza, chocolate chip cookie pie a la mode (sooooooo goooood!), and generally not doing much. It felt really great. I realized that it has been a long time since I’ve done nothing except read a book all day. 

At bedtime, as I stood downstairs finishing the last few pages of my book, I heard Amy initiating a cleaning game with Sarah. When I came upstairs Amy informed me that now she liked cleaning and wanted to continue. Um…. This is amazing. What will be even more incredible is if it continues in any way today or ever. 

May you rally when you need to and rest when you need to.

June 24

Thank you so much for your midweek support regarding Sarah’s seizure. Whenever I reach out midweek like that and the support pours in, coinciding with Sarah fully recovering, and I feel better, then I have moments of feeling like I shouldn’t have asked for support. I feel like I should have kept it to myself and immediate family until the time of this update. Why?! I have no idea. Perhaps because there is a societal love of being strong and stoic, as if stoicism and keeping things to oneself is actually the same as being strong, which it’s not. I don’t know. What I do know is that it helps. Maybe the reason I started feeling better so soon was because I didn’t keep it all to myself. Maybe being strong is being willing to let the emotions pour out and asking for help and then bouncing back resiliently. Maybe it doesn’t matter whether it gets labeled strong or not. Maybe the important thing is just noticing what works for me. So I thank you all for helping with what works for me.

When Sarah had her seizure in December, it took her all day to regain her normal speaking and walking. Maybe that seizure was more intense (it seemed that way) and/or maybe it helped this time that she was allowed to remain at home and just sleep. I think this one was also less intense because she was speaking and moving normally in very short order. I spent the entire rest of the night barely sleeping and jumping protectively at her tiniest sound or movement. Some of the time we were in my bed, but then she moved back to her own. I placed myself on the floor next to her bed and there was one moment when she started moving and half fell out of her bed. I helped catch her but quite awkwardly with my arm so it has taken a few days to feel like everything is normal in my shoulder joint. 

The ridiculous thing about the timing for the seizure is that I had just been informed that her camp and school couldn’t have her attend if she needed the anti-seizure just-in-case meds with her at all times. Because then they would need to hire a full-time nurse. My waving that requirement wouldn’t suffice. I contacted Sarah’s neurologist the day before her seizure and asked for a letter revoking her need for the prescription to be with her at all times. He said he would send it. Then she had her seizure. Then I told her camp what had happened and since I didn’t yet have the letter and since she had just had a seizure, I needed to be there for her to attend camp. Some people suggested I could just stay home with her. Either way I would have had to cancel my plans. Sarah talks about camp all year long and loves it dearly that I opted to hang out in a spare room. I was granted time to get things from stores that were within a 5 minute radius so I could get food. I also got a blanket and pillow. (It is just a day camp, but I wanted to be able to nap.) At the start of that day, being sleep deprived and frustrated at needing to cancel my plans, I was full of tears, crying hard in the car before getting my supplies. Then I settled in, and I think it was actually a perfect way to make sure I rested. There wasn’t much else I could do! I did email the neurologist again to ask for the letter right away and say, “Oh, and by the way, Sarah just had another seizure.” I was worried he would change his mind about the letter, but he didn’t and I had it ready to deliver to camp the next day.

Since Sarah was completely herself it was easy to be relaxed about her during the day. As evening approached I was filled with panic and dread. How could I sleep?? Yet, how could I not? It’s not as if my vigilance would actually prevent a seizure and she hasn’t actually needed to be protected in any way when they happen. Still. She is still my baby. I found a book that focused on a Christian Science spiritual perspective of life and read that by flashlight in my room. I couldn’t bear to close my bedroom door to have the regular light on and I couldn’t bear to be downstairs and I couldn’t bear to close my eyes. Eventually the reading helped me be calm enough and tired enough that I did sleep. Sarah eventually joined me in my bed and had the sort of fitful sleep she often has when Carl is gone. This includes periodically jerking upright with a snort and then settling right back to sleep. I do not settle right back to sleep! For the second night post-seizure I somehow was completely at ease. I remembered how long it took me after the December seizure to regain my calm at night and I decided I didn’t want to wait several weeks again and that I could just go back to normal. 

I do have hope that once again this seizure was a result of new supplements started a week ago. It is probably an overreaction to say we will stop seeing this new naturopath and stop all the new supplements and not see a naturopath again. Or maybe it is just right. This mama-bear has had enough.

Enough about seizures…We have Mom-Mom and Pop-Pop visiting and it is wonderful. They haven’t seen the girls in several months and they are blown away by how verbal and confident Sarah is. When they comment on things with amazement it is interesting to note that part of me is thinking “Oh, ho hum, yes, she’s been doing that forever now.” Yet of course it hasn’t been forever. It is wonderful to have things that at one point seem like miracles become common place. That in itself is perhaps a miracle.

This morning the girls and I went out to breakfast at the Square Cafe. Our timing couldn’t have been better if we tried. When we walked in, there were Sonia and A.! So we had a breakfast date without even meaning to. The girls did a much better job with the walk than I expected. On the way home they played hopscotch (well, they hopped around) on some patched areas of sidewalk and they sang their “Little Lost Kitty” duet. I realized recently that I need to start letting Sarah order for herself at restaurants. I can clarify any extra details if needed, but there is no reason she can’t order. 

Lots of love and appreciation to all of you. If you are ever having a hard moment, let me know and I will send you lots of love.

June 17

You may notice that I am going barefoot lately. That is because Sarah keeps knocking my socks off! She just seems to have a bit more fullness and clarity to her communication and a wider range of creativity. 

When Carl was getting the girls ready for bed recently:
Amy: Sarah, are you going to wear pajamas?
Sarah: yes! I am going to wear pajamas! Do you want to be twins?
(They proceeded to wear matching pajamas and socks. What amazed us was Sarah’s initiation of dressing as twins.)

Sarah had extra time with Sc this week and sitter A, both of whom bring gorgeous creativity to their play. Some SR time with Sc led to the creation of a menu on the SR room white board. When I did SR time later that day, Sarah would take my order and then say “coming right up!” She then scampered off to the bathroom or her room and returned a minute later with my pretend food in her hand. She also got food for various book characters. The hungry caterpillar got a green leaf, the Pigeon got a hot dog, the Duckling got a cookie, and Xander the panda got bamboo. When our time was up she asked to continue! That hasn’t happened in forever. The thing is, I was barely participating. I kept accidentally dozing. Then she would deliver my food and give me a kiss and tickles to wake me up. This is the first new game that has happened, at least during my time, in many months. I think it originated during her time with Sc. and just continued with me. 

Sarah had another session with Sc and suggested that the marbles at the end of the marble run were students in a school. They had the three schools of Amy, Sarah, and Sc represented. Sarah donned her non-prescription reading glasses to read out loud to her marble students. 

Saturday morning the girls sang a duet of a song they learned from piano lessons called “Little Lost Kitty.” Sarah sang it clearly all the way through the first time, in sync with Amy. She lost some clarity in her excitement/shyness the second time  because she was being recorded, but she still stuck with the song all the way through and gave a huge smile at the end. It was so super cute with both girls standing next to each other in matching shirts and pajama bottoms. I kept thinking about how far Sarah has come from from her stilted singing a few years ago to her mostly clear singing of today. Amazing. Seriously amazing. Both girls were beautiful, adorable, and ever so earnest.

I love how Amy rejoices in Sarah’s improving abilities. After her Anat Baniel session, Sarah told her practitioner to have a good summer. Amy probably saw my astonished look of delight that I directed to the practitioner. As we left, Amy said, “that was so great how Sarah said that!”

To celebrate Father’s Day weekend we decided to stay in a local hotel last night. I was taking a class in the afternoon so I joined Carl and the girls for dinner, after they had already enjoyed watching tv and playing in the pool. Dinner was lovely. The weather was perfect, we were outside so Sarah could watch traffic, there was a fence separating the seating from the rest of the sidewalk so I could be relaxed about Sarah being up and about, and there was a girl next to our table who loved art and cats so she and Amy had a small play date while waiting for the food. It was just a small slice of perfect.