Sarah-Rise
Sarah is a sparkly, passionate, stubborn child of 17. She has developmental delays and autism. When she was 4 I decided to run a Son-Rise Program, calling it Sarah-Rise. She wasn’t speaking or eating well or potty trained. Eye contact was fleeting, she didn’t play games or play imaginatively. She couldn’t read or write. All of that has changed. I started writing weekly updates so that people could follow our journey.
Sunday, April 21, 2024
April 21: Meltdowns, Mom-Guilt, and Medical Appointments
Sunday, April 14, 2024
April 14: Sun and Rain
Sunday, April 7, 2024
April 7: Snow, Creativity, and Stopping
As is so common for an April morning, I am gazing out my window at snow. True, we are in the mountains of Pennsylvania, but still. Snow! Carl was thrilled, I was glad I still had my snow tires, and Amy was consternated. Sarah didn’t seem to mind either way. Yesterday Carl and the girls enjoyed a short burst of riding on a snowmobile. Amy likened it to a rollercoaster so I was hesitant to try. Carl reminded me that he was “the boyfriend who listened” about me not liking rollercoasters. It is true that after the one small rollercoaster he convinced me to try, he has never suggested or pressured me to ride one since. To his immense credit, he also stopped on the snowmobile as soon as I wanted to stop, which was after mere feet of riding. I will try again when there is more snow and no gravel peaking through underneath. I will try again because I have complete trust that he will stop if I say to stop.
Sunday, March 31, 2024
March 31: Florida, alligators, and Easter
When we go on vacation, Sarah often suggests getting flowers for me, because we did so once many years ago. It has thus become tradition to get a bouquet that we can actually keep out in easy view instead of hiding it in a cabinet so our cat won’t eat it. Amy promptly pretended to be a big cat trying to eat the roses and then hopping off the counter with her cat butt held high.
One discussion ended in tears of laughter. We were talking about some friends we could maybe visit briefly this summer. Carl said he thought the kids were about Amy’s age. I said, “Oh, I think they are a bunch older… like 13.” I meant it honestly, not as a joke, but then collapsed in deep laughter given that Amy is 13!
Sarah was in fine form a few hours after having a big meltdown that Carl fielded while Amy and I were beachfully unaware. It was helpful to have Sarah in her sparkliest mode while we waited at a restaurant for a long time. We knew it would be a long wait but I underestimated how much I should have bundled up given the breeze. I was freezing. I was also grumpy because that is sometimes what I do when things don’t make sense to me. The restaurant didn’t take reservations but you could call ahead to get in the queue. We did. They said the wait would be two hours but to show up in one hour. Why?! I cannot comprehend the reason I needed to be there in the chilly breeze instead of snug in our place a short drive away. While I was being cold and disgruntled, Sarah was doing her version of cartwheels and running around with her arms stretched out, saying she was a super hero. During dinner, which was delicious enough to make up for the wait and incomprehensibility, the table next to ours emptied and Sarah found it hilarious when the staff cleaned the table and the food on the floor. She was laughing so hard she could barely get her words out.
Yesterday we took an airboat ride to see alligators! We saw so many alligators of so many different sizes. We saw a large one snapping its jaw, we saw all sizes swimming and sunning, and Amy and I were beside ourselves when we saw a cluster of babies. In the gift shop Sarah was a goof, hiding in a rack of shirts so all we could see were her legs and feet. After that adventure, Sarah wanted to nap, so Amy and I went to the ocean. Amy was her usual mermaid self, and the waves were back to their normal rather gentle selves. Once we got cold we made our way to the hot tub and pool. Amy then made two new friends, much younger than herself. I think they were five. All of them had a great time, and the parents kept thanking Amy because their kids were having such a blast.
Easter morning began as most vacation mornings, with Sarah sleeping in all the way to 6:30 and Amy sleeping until 8. Luckily Sarah didn’t notice anything odd as she crossed the living room to get to our room to hang out, talk about foxes, and watch her show. At 8 I told Amy there was a mess to clean up and she got a knowing gleam in her eyes. Amy gracefully found many jelly beans, plastic eggs, and chocolate eggs while leaving many that were in plain sight for Sarah to find. Carl Bunny hid items in varying levels of difficulty from over easy to eggspert. The final hardest items were hard for me to find too. Once I saw them I left them for Amy to find. They were some of the best hiding spots I have ever witnessed, including a sparkly pink foil wrapped egg nestled in a pink rose.
May you find all of your eggs.
Sunday, March 24, 2024
March 24: A Big Week
Monday was a big day for all of us. It was my shared snowy birthday with Amy and it was the usual packed Monday with Sarah’s piano lesson, Amy’s art class, and Sarah’s evening rehearsal. I received a wonderful massage that thoroughly ironed me out, and then had lunch at a favorite restaurant with a favorite friend. Amy’s dinner was one of her favorites, but not immediately. When Carl picked Amy up from art class they somehow got on the subject of broccoli pizza. He made her broccoli pizza as a joke, with a huge broccoli stalk on top of a piece of cold pizza. Then he helped her assemble her actual dinner of a taco. Just as he was making her 3D pizza, she was drawing a picture of broccoli pizza for him. Since she doesn’t like broccoli, this seemed like a gross creation from her perspective, but the rest of us thought it looked tasty.
As I continue the process of closing my massage practice, I have been emptying my office. I’m feeling quite pleased with my inspiration to change our family room around so that there is room for my office desk and chair in a corner with a window in the front and to the side. This is now Amy’s art desk and I spent hours organizing materials, moving them to new locations and sharpening tons of colored pencils, and making piles of things to donate. Amy loves her new desk when our cat actually vacates the chair long enough for Amy to occupy it.
We are having a lovely visit with Mom-Mom and Pop-Pop, complete with snuggles, talk about foxes, cat videos, and a failed attempt at making spectacular Easter eggs. I saw a video online about swirling food coloring in whipped cream and putting the hard-boiled eggs in that to make them beautiful and swirly. Epic fail. Some of them have tiny tinges of green, blue, or red. But mostly they have slight tinges of brown. Nothing is vibrant, swirly, or dramatic.
The biggest thing on my mind and heart is rehearsals for Sarah’s musical. I am wishing I had said no to the whole thing as soon as I learned the rehearsal hours and that I would be her support person. Monday she lasted all of 20 minutes before wanting to be done. She hadn’t gotten a nap so perhaps I could have predicated that she wouldn’t last long. But the show is a month away, the dance routines are fast and complicated, and she never wants to stay the whole time at rehearsal. I felt so drained and awful about it all on Monday that Carl took Sarah on Thursday, with the explicit goal of lasting the whole time. He talked to her a lot about how if she actually wants to do this thing she needs to be at rehearsals, but that she can still change her mind if she isn’t having fun. She continues to insist that she wants to do it. Thursday they did persevere and she made it through. Carl is taking her to rehearsal this afternoon, which will also be a challenge. It’s not late at night but she hasn’t made it the whole three hours since her first Sunday rehearsal. When we try practicing the dance numbers at home she gets tired and whiny and doesn’t want to do it after just a few minutes of the simple moves. We have yet to get to the speedy complicated moves. I feel like we are in way over our heads and I just want to somehow get to May and maybe miraculously this will come together. But it won’t be a miracle. It will be us working our butts off along with Sarah. Part of the hard part is just keeping Sarah in the right mental and emotional state to do this. I feel so tense and anxious about this that I don’t feel like a good helper at all. Tomorrow I start a zoom support group for parents like me who have run Son-Rise Programs, so we want to be in that mindset but have challenges as all parents do. I certainly have a challenge and certainly want help to keep myself mentally clear. Basically, Carl and I realized we need to keep working towards the goal but always with the flexible ease of being willing to have Sarah drop the musical at any point. But whenever she starts protesting I get all tense too. This is hard. I know that we can do hard things but I’m not sure I can do this hard thing.
Sunday, March 17, 2024
March 17: Realizations and Celebrations
Sunday, March 10, 2024
March 10: Biking, Bandits, and Bears
Sarah loves album covers and her latest love is the New Republic “Native” album with various animals including what I think is an owl, a buffalo, and a mountain lion. Sarah really wants there to be a bear. As we talked about it one day and she pointed at one animal I said, “I think that is an owl.” She responded, “maybe I will call it a bear.”
Foxes are Sarah’s biggest new love. I’m not sure what kindled her interest. I know a few weeks ago when her bus driver sneezed they had a good time pretending it was because he was allergic to the elusive attic fox as they pretended to drive through an arctic jungle. Now Sarah loves saying the word “fox.” It is the first word she says when she wakes in the morning or from a nap. She follows it by asking me, “what is a fox?” Sometimes I ask her what it is. Other times I come up with various descriptions such as, “a mammal,” “a woodland creature,” or “an animal with a fluffy tail.” When Anna was babysitting on Wednesday, I was in the kitchen and only half paying attention to what was being said, but I heard Sarah say “Exit has the letter x… can you think of any other words with the letter x? … FOX?” It was such a hilarious and beautiful set-up that Sarah created to lead to her favorite word.
Roughly eight years ago Sarah was evaluated by the public school system to determine her placement in a classroom if she attended public school. That wasn’t the path we took for her but those records are part of her IEP which is renewed and revised yearly. The IEP is new each year but the evaluation hasn’t been repeated until last week! And that was only because we asked for it since it is needed for her to have a supports coordinator in place for when she turns eighteen. I had to fill out many forms too, along with an autism scale questionnaire. I hate such forms and questionnaires that somehow take my wonderful sparkly amazing daughter and put a negative slant on her abilities or lack thereof. The question I really couldn’t stand, but had to answer, was for the autism scale so I had to rank her as “never” up through “frequently” with options in between. The statement to rank was “understands why people don’t like him/her.” What the actual fuck? Firstly, do people not like her? I’m not aware of it beyond how one could generalize that nobody is universally liked, but why would you even say that? Secondly, if someone doesn’t like her, I hope she doesn’t know it!! And what are they assuming about who she is that there are things a person couldn’t like and she would know what those things are?! This was just the most egregious of the questions. I’m glad to leave it in my rear view mirror and not look back.
Amy had the first of many upcoming birthday celebrations, enjoying her Birthday Bash Sleepover at Anna’s. When Carl went to get the girls yesterday morning he was greeted not by Amy, but by Effie from The Hunger Games. Amy was incredibly made-up so she didn’t look anything like herself but was all Effie.
We had a wonderful week of concerts. On Monday Carl and I saw Bandits on the Run at Club Cafe. The girls couldn’t attend because of the age restrictions, but I recorded some songs and the girls watched their own virtual concert last night. Sarah quickly got up to dance and then grabbed her own guitar to jam along with the Bandits. For those who may be new to my updates, Adrian from the Bandits used to volunteer in the Sarah-Rise program. What is impossible is that that was roughly twelve years ago!
Friday night Carl and I went to a Josh Ritter concert. It was just Josh solo rather than him with his band as we had seen him in Philly. He was playing songs that are works in progress, along with the usual favorites. It was a great show but the venue isn’t one I would go to again unless it is a favorite artist. It was at the City Winery and the tables are packed very tightly so good luck if you have to get up to pee. Also, to allow everyone to see and not have their back to the stage, everyone is sideways to the stage so you have to twist to see. My neck was not happy after 90 minutes of that.
Anyway, yesterday I had a wet drive to see my dad and stepmom and brother in Delaware. It rained across the entire state of PA all day long. At least I had good music to listen to, playing Bandits on the Run and Josh Ritter as the miles sped past.