The Barriers

Probably because the kids are back to in person school, my quiet house, and my break from my masters program, I have been thinking a lot about the special needs of our children. I listened to a number of talks given as part of a conference on executive function a few weeks ago. I’ve also been bingeing a pod cast about it too (linked below). It seems like this is the neuro-developmental link between all of my children. They all have differing neuro-developmental abilities, but they all really struggle with executive function in different ways.

Wes’ disabilities result from a nearly total inability to execute any executive function. He can’t process the numerous senses occurring in any given moment. Wes experiences emotion, often intensely, he has no ability to regulate them. They come in intense waves that change on a dime. Wes’s mood teeters on the extremes, very happy or very unhappy. Wes lives in the “now”, everything that happened in his past, happened “yesterday” and everything that will happen, happens “tomorrow”. These are not just vague concepts to him though, he is genuinely upset when “tomorrow” comes and whatever we actually planned for weeks from now doesn’t actually happen because today is yesterday’s tomorrow but not in fact the day that everything will happen. Time is meaningless to Wes, like when you were five and enjoying yourself at the pool on a hot summer day when suddenly the sun is setting and it’s time to eat dinner and settle down for bed, but you feel like you just got there. There is no effective means by which we have successfully oriented Wes to time. We use lots of visual schedules, calendars, transition warnings and countdowns, but he never seems to understand any of them fully.

While none of the other kids struggle at Wes’ level, they have their own challenges. Ava and Taylor have similar struggles. Challenges include organizing themselves, focusing when presented with non preferred activities and hyper focus on preferred activities, and social difficulty. They need frequent reminders, they need things broken down into smaller steps, and extra time to process. They both struggle with reading and spelling. Both have some coping mechanisms that help with these challenges at times, but no skills at other times. One of the most difficult parts of parenting Ava and Taylor is knowing how capable they are, while having to maneuver around their needs and their general unawareness of their own struggles. It is so hard to try to push them to a higher level while also acknowledging where they are.

Several years ago I would have told you that my only “normal” child was Liv. I know now that “normal” doesn’t truly exist. I try to remind myself of this in the most challenging moments in life. Those moments when I feel like the weight of all the needs are crushing me. Liv has what seems like uncanny executive function, hyper organized, highly accountable and responsible. Over years of building self expectations and loading their own responsibility a debilitating anxiety has formed and encased Liv. Processing basic feedback and simple comments results in extrapolated and twisted extreme self doubt and criticism. Liv wants to please everyone around them so bad, that I think even they can no longer know their own preferences from what they think others want them to prefer. Somewhere wrapped in all this self deception, anxiety and fear lies these deeply hidden questions about their own identity and how they fit into this world. It really breaks my heart to think about Liv fighting with these feelings all alone. As these things have bubbled up to the surface, I see signs of inattention, fidgeting, and other social behaviors that I associate with autism. I wonder if these things were always there but Liv seemed to be coping better so I didn’t see them, or have I been blinded by the vastly greater needs of the other kids? Either way, I feel like I have somehow failed Liv for my oversight of challenges that they experience.

Tilt Parenting (linked below) is the pod cast that I referenced early in this post. They recently interviewed LeDerick Horne a spoken word poet and advocate for people with differing abilities. Mr Horne performed one of his poems. I encourage you to click the link to view it on You tube.

My kids have many labels, none of which define them, but all influence their self confidence, self image, education and opportunities. I’m grateful to those normalizing these challenges, paving roads, and advocating on our behalf!

1Year Ago

A year ago yesterday was the last time that my kids spent a day in a classroom. For them, this was the beginning of this nightmare. COVID 19 became a real part of their vocabulary. Life as they knew it completely changed. I could count on my two hands the number of times since then that the kids have left our home.

The prospect of beginning in person hybrid learning next month comes with fair amount of anxiety for them. It’s not quite like I think you might imagine it to be. The kids have finally found a place where they know what to expect from CDL and they have a routine. The idea that we should uproot all of that now, when the end of the school year is just two months away, is not being met with welcome arms from anyone in our home. Our school district has been pretty tight lipped about what to expect from this “hybrid learning” too. What we learned just a few days ago is that they will go either Monday and Tuesday or Thursday and Friday from 8:45 to 11:45, and then are expected to complete those days in CDL. The logistics of figuring out how to get them there and home alone is pretty ridiculous. We have decided that we will drive Ava, Liv and Tay who all attend the same school now. In theory they will be in the same “cohort” having in-person learning on the same days of the week. Wes will have to take his bus. We thought there was low risk here since he already takes a special bus for kids with special needs. But this means that Wes will be on a bus for at least 60 minutes, probably more depending on how many stops the bus has. All for a 180 minute school day. I have a lot of reservations about this plan. It seems pretty ridiculous to me at this point.

Jon calculated it out, with hybrid learning starting on April 12th, our kids will have a maximum of 16 days of school for the whole year. At three hours a day, well that is 48 hours in class and 16 hours on a bus.

As I reflect on this last year, I am still in shock by how little we now “know”. It feels like so many big questions still hang around every corner. I spend my weekends “off” volunteering my time at the airport mass vaccine clinic. I think I vaccinate about 12 patients an hour give or take. At that average, I vaccinate about 50 people every shift. So far, I have completed 5 shifts, so 250 patients. I feel really good about that. I had one known “moderate exposure”, where I cared for a patient without sufficient PPE due to PPE shortage and inadequate recommendations. It happened on April 3rd. I was so angry about it. It was my second shift back to work after my medical leave. I spent my whole leave worrying about how I would protect myself (and more importantly my family) from this horrible new virus. So part of me was angry that I wasn’t successful, but more was angry that compromises were being made by the health care industry. My safety was calculated against predictions about what might come and how much PPE supply was available. This was clear early on, but with the CDC under what amounted to gag orders by 45, technically speaking, the hospital was protected under the context of “following guidance”.

Most of the last year, I have spent feeling angry. First at the hospital for keeping PPE from me while I came to work every day exposing myself and my family to whatever might have been there. Then at people around who ignored social distancing and masking, and at 45 who spewed out so much shit information that emboldened those who ignored recommendations, slowed our understanding of the virus and its spread, literally spread it with their ridiculous rallies, and I could go on. At least now, I feel like my small role in vaccinating approximately 250 Oregonians, is something moving towards beating this virus. I’m finally doing something to fight back. Not that I haven’t been doing so all the long. I have shared information that I found reputable and trustworthy, I have led by example, and I have treated many patients in hospital with known COVID infection. Not to mention that I voted that a*******e out of office. I have been fighting for the better part of year, and combating misinformation. But only now do I feel a little bit like its working.

Happy New Year!

Ground Breaking

5 months ago we decided that we would tackle our rotting deck. The hole in the middle of this picture is where my chair broke right through one of the deck boards! I was sitting in the chair eating dinner with the family, and then I was sinking to floor… it was great.

I had a hunch that the kids would not be “in school” this fall, and we have talked about turning the deck into a space that was more usable for our family (who hate bugs and sun😲). So we decided to invest in an insulated 3 seasons screen/sun room. Doing this will add 200 sq feet to the house and expand our use of this space year round! For now, we are planning to put our office here, at least while we are schooling and working from home!

So we finally broke ground, so to speak. The contractors came and demolished the existing deck. (which was quite rotten!) our permit request was submitted in early September, and hasn’t been processed yet. So now we wait. As soon as it goes through, we are ready to go!

Please Clackamas, deliver our permit!!!

Good hair day

Twinsies, but don’t tell Wes cause he is in an anti-twin phase!

Today Wes’ amazing PSW was ill and couldn’t come. So Jon and I scrambled to fill her shoes, sitting in on all his classes, reminding him endlessly to pay attention, mute and unmute, and constantly reminding him that he was “in school”. I think this is all very confusing to him.

His teacher this year is a very patient young man who frequently tells the males in his class that they are being a “good man”. I’m not sure how I feel about it. I don’t think I would appreciate a teacher telling my daughters that they are a “good girl”, yet, I think his intent is to develop ideas about what makes a “good” man. I think his intent is good, I’m just not sure how well it reads.

Before school I was working on some headbands to help cover up my new tennis ball sized bald spot (where they shaved my hair to excise the cyst last Friday), and Wes really liked my Halloween themed fabric. So I made a couple head bands for him and Ava too. He was excited to have a new posse, the “Halloween headband club”. This has been a thing for a while now. Sometimes he gets really excited when someone (or more than one) is wearing the same color as he is. Sometimes this, alternatively, makes him angry. We never know which Westli is climbing out of bed, so none of us plan our wardrobes based on what Wes is or is not wearing. Today he was excited, hurray!

Wes gets big ugly pimples. You can see one on his nose and by his left eye. He has been getting them for years too. He hates being asked to wash or wipe his face to prevent them, and he really hates when they get big and painful. I do try to intervene, but he just thinks I like pinching him and making everything hurt. Recently Taylor and Liv to a smaller extent have also been getting lots of break outs. I have less concerns about them as they are almost 15. Wes has gotten them since he was 8 or 9. (That is also when his secondary reproductive features started… long hairs mostly) I haven’t seen it growing much on his face yet, but that will come soon.

Well here is hoping the rest of the day moves along seamlessly!

Signed and Sealed

Tonight Taylor and Liv got their first shot at civic responsibility. We sat down together with our ballots and voting pamphlets and discussed the issues. We asked them to offer their choices and support it with arguments. We discussed the importance of knowing the source of your information and how to dig through the fluff. I wouldn’t say that they swayed my vote at all, but generally we are all in agreement about who and why we would choose someone to vote for. We took our time, about an hour and fifteen minutes. We did so because there is so much at stake in 2020, and I want my children to vote responsibly in three years. All that is left is to mail back, or drop in a ballot box. Since we live very close to both, I will like drop mine in the ballot box directly. It’s such a satisfying feeling.

PLEASE VOTE, PLEASE VOTE RESPONSIBLY, PLEASE!

Virtual Update

It occurs to me that I haven’t commented recently on our distanced learning experience. For Taylor, Liv, and Ava, I would say that we have settled into a good grove. For the most part, these three are independently attending their classes every day online and completing their work. Jon and I get messages about overdue work, and we ask about assignments, but not much more than we would have done with them in live school. Ava has run into some difficulty understanding some of her work and organizing herself. It is actually better at this point than it was last year, and her in class participation has been awesome. I think we are having more success in virtual learning at keeping her distractions to a minimum. We met with her teacher during office hours and she did nothing but rave about how well Ava is doing. Which makes us feel like we are doing something well.

Our parent teacher conferences (who is the parent that is not the teacher?)…are coming up in 2 weeks already. I reviewed the grades that are posted (in all fairness about half of them are not posted at all) but right now, all of my kids are straight A students! Party! I take what I can get!

Meanwhile, a very perky lady from the school district came to our house today to drop off the items in the picture above. Yup, you saw that right, a 4 inch binder filled with double sided worksheets for Wes! I wonder what army they are sending to get him to do it?

They also sent what looks like an abacus. She called it a manipulative… he can count much higher than ten, so I’m really not sure what he is supposed to do with it. She excitedly told me that he could play with it, and she would be back next week to pick it up and drop off something new. I know that I should be grateful and happy to have perky caring individuals willing to risk their lives to drop off “fun” things for my kid, but Wes already knows that there is nothing fun in that binder. And the abacus thing lost its appeal as soon as it was put together (assembly was required)!

Wes’ work cubbie.

Wes works at the island in the kitchen. It’s not ideal as he is highly distract-able. Every time someone fills their water cup, uses the bathroom, or otherwise presents their presence in any room downstairs, he gets distracted. Keaton, his PSW is our angel. She makes virtual school something that even though it’s hard, is doable. We got word today that a new ABA therapist is ready to start as soon as the insurance plan approves the “plan”. This will give Keaton a much needed break. I am curious to see if they have success working through Wes’ new binder-o-fun.

So that is the virtual update, virtually.

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!