Clorox

Before the pandemic, approximately every six months, I received a shipment of Clorox wipes as part my subscribe-n-save subscription on evil Amazon. I know it’s evil, but I live on a budget on borrowed time, so some evils are necessary. I found if I purchased my cleaning products this way, with a reoccurring replenishment, then I was better at using them. Thus, my bathrooms were clean with sparkling toilets and showers/tubs. And with a big child whose potty skills are less than apt, well we find an abundance of need for the use of harsh wipes! Of course I never used as much as I had, so I found myself at the beginning of a pandemic of a novel virus overstocked with Clorox. Who could be happier!?!

Fast forward about three months of mad daily cleaning, and my stockpile was nearly gone (and not as much stockpiled as I had thought). I decided to leave the Clorox on my list, even though I was fully aware that it would be quickly out of stock for awhile. Every month it told me it was out of stock and I deferred it to the next month. Well, today it came!!! I got three fresh new bottles of disinfecting bliss!!!

Our COVID routine has transformed with knowledge, social distance, and lack of access to abundant Clorox, so I will likely continue with Lysol spray and reusable cloth in favor of saving these wipes for Wes’ messier accidents. I sure am grateful to have them again!

I haven’t tried to reload in gloves yet. We still have a little more than half a box, but that need will come soon. Fingers crossed 🤞🏼 that they will be in stock when we need some. That thin glove is often the only think that keeps us from loosing our lunch! There is a really good reason that most almost 12 year olds are potty trained!

Sp.ed. and other ramblings

I forgot to post photos of the waffle cakes… So here are a couple.

I have three sped (special education) children. One is pretty high functioning with support, one is just getting her feet wet and supports haven’t been well identified yet, and one is low functioning even with all the support they throw at him. I use “support” here in the way that the school and federal/state education boards use the term. To me, accommodation is a better term. My kids are assessed and have goals established and evaluated constantly. Still, all three of my sped kids are pretty behind when compared with their peers. There are good reasons not to compare kids, and I try not do so either, but once in a while I sit back and think, “how would my life look differently if these three kiddo were more typical?” The honest answer is that something else would take the place of my current worries/troubles/challenges, but sometimes I think it might be nice to worry about those things instead of the things that I do.

Just a little bit ago Jon was sitting with Wes on a zoom call that was meant to serve as a math assessment. It was painful for me to set over at my desk and watch, and it was painful for Jon to sit next to Wes powerless to aid in any way. The teacher certainly couldn’t say, but I would bet my life on the fact the he might use the word “painful” to describe the interaction also. Wes, however, was gleeful as he jabbered on about anything that came to his mind. Inadvertently he answered a couple questions right, he did demonstrate a few skills that he actually has, and his “jabbering” was on topic - mostly number songs that he made up. Every 30 seconds the teacher tried in vain to reestablish Wes’ attention, which mostly failed until Jon intervened. Usually with a physical and verbal cue about where his attention needed to be. Many things that Wes actually does know, were not demonstrated because who could stay on topic through all of that to get down to what it means to subtract two numbers. (He can subtract basic 0-9 numbers, sometimes. But I don’t think he really understands what it means to “take away” or “subtract” or “minus”.)

So far, comprehensive distance learning has meant hours (4hrs in increments of 55 min) of Wes sitting in front of his iPad while the world zoomed (literally) in front of him. The speaking in these classes goes so fast that Wes cannot seem to keep up with what is being said. By the time he has heard, then interpreted, then prepared a response, the class is onto something else. When he is called on to answer a question, it takes 3-5 minutes for him to articulate his ideas. Sometimes because it took that long for him to get the courage to speak, and often because it takes that long for him to form the thought and the language to express it. When he does finally speak, he needs to be taught how to turn on the microphone over and over, and he speaks so quietly that almost no one, even us sitting next to him, can hear it. My boy who is often outspoken and inappropriately loud, is completely shy and intimidated by the concept of speaking on the computer.

For my other kids, I keep them on schedule, but they are able to find and log into their classes on their own. They need me to ask about what homework they have and if it is done, or guide them in determining how their time should be used. But Wes, he needs someone to take him to his work area, turn on and navigate the device, listen to the class and redirect his attention every minute or so, engage him IRL in the topics that are being discussed online. He needs to be prompted to listen to what is being said, and begged and rewarded to sit up, not mess around with the screens, and stop talking (to the aid, because he won't talk to the class). On a good day, this is all that is required, he might even try to answer some questions, but most days are not so easy. He screams, cries, throws his body down, lays his head on the table and covers it with a blanket. When I say “aid” I mean parent or PSW (Keaton- who is amazing and patient and I don’t know what I would do without her!!)

Our school district identified early that in person school would not be a reality at the start of this year. Jon and I support this concept, as most students should not be in school while the pandemic remains out of control. At the same time, Wes is not learning in this environment. We do not have the resources to maintain this level of support at home, and our district seems deaf to the difficulty. I attended three Zoom meetings before school started around services for students with special education needs. I had countless emails with Wes’ teachers to voice my concerns. I see them doing everything that they can within the confines of the directives from Oregon department of Education. It’s just not enough.

Ava has not had any contact from her special ed supports beyond an email with instructions for setting up audiobooks from he library… which we already a have three audiobook applications where she can get books for leisure reading. What she needs is support around organizing her work and figuring out how to complete things. She needs remediation in math and practice using her reading skills that her tutor has been working on.

Taylor needs much of the same support as Ava, but in a way that will make him a successful high school student. He needs someone to highlight how that is different from being a middle school student. He needs some guidance around how to navigate this and how to keep up. Taylor has had no communication from his supports. I have no clue how anyone is “supporting” Taylor as outlined in his IEP.

In CDL, the concept of support is foreign. There is no special education, there is just one kind of education, and it presumes a lot of skills. It also presumes a lot help from parents. It is not hard for me to see how this education exposes disparities for all sorts of children.

More cake, cause this topic got deep real fast… sorry….

Pronouns

Many years ago when Wes started ABA therapy one of his goals was to learn pronouns and prepositions. I thought this was fine, even useful for a four year old to understand what it means to have something on, under, or next to something else. Equally I thought it was useful to understand what was meant by he, she, him, her, etc. Fast forward a few years, and I can say without much doubt that Wes understands on, under, and next to, but he still can’t always use them properly when trying to describe where objects are. Likewise, I think he understands the concepts of -he verses she- in our general cultural context, but he rarely gets those right either. We used to spend a lot of effort correcting him every time he misgendered people, but recently, say the last two to three years, I no longer see the point.

Liv helped me see that pronouns have meaning, even if I used them as just words. I think there are many words in our language that if thought of in this way, we might stop using. My Pronouns is a link to another website that has a really good explanation about why it matters that we use more care when addressing people with pronouns. I have become pretty good at using they/them when referring to people whose preferred pronoun is unknown to me.

I am very fortunate to work at a company that values these types of conversations, and gives me a lot of practice outside of my home too. As a parent, my gender non binary or transgender child gives me plenty of worry, especially with a shifting political environment that is prone to injustice and inequality, but it also gives me a lot of perspective. I am forced to look at our world through the lens of this child and their challenges. Maybe we could all spend a bit more time doing that.

TGIF

Since I usually work every Friday, TGIF is not usually in my vocabulary, but today, TGIFF!!! I can see how live interactions with teachers and other students is helping most of my kids, especially Liv. But I can also see how stressful it is for them trying to follow their schedules, keep track of zoom links and assignments, and focus on what needs to happen in an environment full of things they would rather be doing. We all need this weekend. We need to regroup, rest, revitalize all that crap. Even my dogs look stressed out.

Wes is having a lot of behaviors. I think virtual classrooms are too busy for him and he can’t follow what is happening, so he just doesn’t try. He talks constantly to us or his PSW, but can’t seem to say a word to his class. The microphone goes on and he freezes. He screams and whines about every 5-10 minutes. He is excited for Halloween, which I can’t seem to emphasize for him enough, will not look anything like he is used to. I do t even know how to make Halloween fun this year. He hates that it’s fall, that we have a family of 6, the number 6, that he has to be in school, that we read books together, that his IPad has time limits, that 8 is bedtime, that the sun comes up, that Cheerios and pancakes don’t fall from the sky in unlimited quantities… I can go on, but I won’t.

It’s been raining for three days, on and off. I’m so grateful for rain, but I’m also feeling constrained by it. This morning I curled up on a chair next to an open window in my bedroom and just tried to hear the rain, feel the wind and the light. Loose myself in nature. Sure, it was a woo-woo moment, but sometimes our brain and bodies need woo-woo!

One week down!

CDL- Day 2

Today was a little more challenging with school. Wes’ school decided to cram everything that they normally put into two days in one instead. It was chaotic for him, and he had a huge meltdown right after school finished. He literally just held it together long enough. I don’t care for stressing out the kids this way.

I have never been so thankful for Wes’ PSW. She sat through all of his online craziness today. Wes cannot navigate through a regular day on his own, so how they can expect him to navigate this crazy virtual stuff is laughable. As fully grown, smart, tech savvy adults, we are struggling. Alas, this paragraph is about being grateful for Keaton, without whom I would be in another layer of hell right now. Thank you Keaton!!! May each day get a little bit easier!

Taylor and Liv seemed to have a good day. They seem happy to have had outside communications with other teens (and teachers). They are excited about their classes and sharing things they are learning about.

Ava had a good day too. I got a little stressed out when a teacher that missed us yesterday lead me to believe he had office hours at 3:15 today. It turned out that his email was sent yesterday and those hours referred to yesterday only. So Ava and I have spent more than an hour in his virtual waiting room, ugh.

Busy Life

I often feel really bad about not connecting better with people. This has been especially evident since the quarantine began mid March. Westli mostly, but all my kids in general, function best when there is a rigid routine. Consequently, I have worked hard to establish a routine since immediately following the announcement that schools were being closed here in Oregon. As the schools began making distance learning activities on their own, I have adjusted our routines as needed, but to keep track of each child’s specific things (zoom meetings, assignments, social engagements, and IEP meetings) I would be lost if not for my Google calendar. I was looking at this yesterday and realized that it was a profound act of juggling that I do everyday to get us through each week. This is the best way to demonstrate it.

In just 24 hours, today has morphed a lot as our school district announced, and teachers embraced, the reintroduction of whole class “meetings”. Today, it so happens, that all four of my kids have a “meeting” at 10am. I have heard a lot about what other families are doing to survive this time, and I don’t think any one solution can work for everyone. I wanted to share a glimpse of what this quarantine has meant for us and excuse away my own guilt for letting some of my social obligations fail.

In the Stanis house, we await the June 12th official close of school and their disruptions to our routines. I look forward to letting the kids sleep until 10 if they want and not keeping track of all their meetings and assignments!

Checking in

Hello from the Stanis Family quarantine, ehem social distancing… whatever. It feels like a quarantine, so let’s just call it what it is. Quarantines have been used for many hundreds of years to keep from mixing the sick with the healthy. Essentially this is what we are trying to do. Enough of that though, I thought it was time for an update about how the Stanis’ are coping with life in the face of SARS CoV 2 (the virus that leads to COVID 19, a disease). No one here has any symptoms of disease. Liv had cold symptoms a few days prior to the schools shutting down, but recovered her runny nose without incident or intervention. Therefore, we are not living in the face of COVID 19, just SARS CoV 2.

Having disclosed that we are all healthy, I will say that this season has been our worst season in a while. The kids one or more of them, have been sick (runny noses, coughs, fevers, ear infections, etc) since November! So this kinda feels good from a health perspective.

So Oregon schools cancelled as of March 16th (a Monday) Tay and Liv had a scheduled day off on March 13, so really they had an extra 3 days. Ava and Wes did have school that day, so our quarantine really started on March 14th.

Having kids with special needs, we knew that this shutdown meant that I had to figure out a routine. My kids all thrive on some sense of routine. I started with a “Covid 19 schedule” that quickly spread around social media pages. This was a great place to start. I learned during the first week that we couldn’t really have an academic period in the afternoon. My kid’s attention, especially Wes’, was so spent that it was impossible to try to learn anything. I also learned that while it was a great idea to put away electronics during the morning, I was pretty dependent upon electronics for most of my academic ideas, thus we needed electronics during academic time. So after our previously scheduled spring break, we embarked upon a new schedule that looks like this:

We have been following this one since yesterday, and so far, its working better for our lives. Tay and Liv go to a school that practices project based learning. So in the morning I try to come up with some kind of lesson (yesterday we made a sour dough starter) that we work on as a group. I try to incorporate math, reading, and writing skills into these “lessons”. In the afternoon, they can use creative time and project time to explore topics that they are interested in. Liv, Tay, and Ava then present what they learned during this time while we are having dinner. We expect that they will have a more formal presentation of everything they learned on Friday. Hopefully I can post them here later.

The schedules are met with a little resistance here and there, but for the most part, it creates an understanding of what is expected to happen. Wes has the hardest time with this. While it helps him to know what is coming, sometimes he doesn’t prefer that activity = resistance. This is not surprising and I try to keep reinventing things to keep it fresh, light, and interesting. Today he spent nearly his entire second table time learning typing lessons with an app on his iPad. It was mostly independent and easy. Which is an A in my book!

As for me and Jon, we are carving out time to keep exercising. This really is the only time we have for ourselves. Last week I went for a jog and an older gentleman on the trail (the trails were packed) pointed out that we had a similar pace. He asked if I minded if he walked along with me. I’m a really accommodating kind of person, so I said I didn’t mind. We had a nice casual conversation and stayed more like 3-4ft apart. In truth, I minded a little. As I said, exercising is the only time we have to ourselves. Every other minute is filled with kids or dogs needing something from us. I miss the hours of the kids at school when I could clear my head and get things I needed to get done taken care of. I felt good though, when it was time for me to turn back, because I think giving the man my “time” was a big thing to him. And right now we all need a few “big things” once in a while.

Our seclusion has marked the end of “winter” and the beginning of “spring”, quite truly here in Portland. Near the beginning the kids enjoyed our first, and only snow fall this year. Wes was dying for snow, he and Ava even scrambled outside to erect a “snowdon” before everything melted in the afternoon. Of all of us, he is the only one who really misses snow. I think that is because he never had to deal with any of the mess of it. Maybe I would like it too if I only got to enjoy the fun of snow.

We kept meaning to get up to the mountain to play in snow, but it just hasn’t really worked out this year. And with the virus shutting everything down, I’m not sure we will get there this season. Our governor has closed state parks, trails, and beaches. It saddens me because the state of things really is so dire. I hope in the end that we all will understand how very necessary our sacrifices were. The kids and I have talked about this a lot to them understand. The idea of not having school has been distressing to most of my kids.

“Snowdog”

As you have been reading along, I included some photos I took while on walks of spring’s blooming. I hope they can provide some brightness to those of you who are not yet blooming.

Welcome Spring

Wahclella Falls

We took the kids on a hike. A bit more than 2 miles round trip. We posed in front of a lovely waterfall.

Ava and Wes played in the water, tossed stones, and enjoyed watching the early leaves fall from the trees high above.

Tay found a walking stick and climbed about before settling on a huge rock to rest.

Us girls took a selfie while the boys climbed up for a higher view.

This is what happens when I ask Ava to smile.

And when she decides to listen….

It was all going swimmingly, sure Wes complained a little about his tired legs and painting rocks when we get home. Liv and Tay were bored at the falls, and Ava wasn’t pleased that Taylor wouldn’t let her use his stick, but mostly everyone was pleasant. Jon and I even enjoyed several minutes of us simply being in a calm place where the kids were coexisting peacefully.

Obviously this couldn’t last. All the way back to the car Wes complained about being hungry and tired and how he couldn’t carry his rocks. Right up to the point when his foot slipped and he fell feet first off the edge of cliff.

He had been bending over to pick up sones and shoving them in his pockets. I knew he wasn’t being very careful, and just a few seconds before he slipped I had a feeling that I should be close to him. I actually had a thought of him slipping and a flash of what I would do. Then suddenly there I was screaming for Jon as I clung on to him. He was scared and shocked and understandably upset. All the rest of the way back Jon held his hand as we reassured him that everything was okay.

But it’s really not okay. In a moment of pure panic I saved my child from falling 20-30 feet down a rocky cliff. The what if’s are in my head big time. It reminds me how fragile life is and how easily this great adventure might have become my worst nightmare.

Maybe I should resolve never to have any more “dangerous” adventures, but I don’t think that is the best thing for any of us. Discovery is a huge part of life, and living involves an inherent amount of danger, right?

Still, Mother Nature, RESPECT! My heart is still pounding!

Smiling Wes

Wes wanted to watch the Packer game with me this week. Usually he gets upset when I yell and cheer at the TV. But it was Wes yelling and whooping this time!