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!

Special Reflection

On Saturday Ava went on a play date with a friend from her summer school camp. Wes always takes Ava’s play dates hard. He really doesn’t understand the skills required for “friendship” and therefore he really doesn’t understand why he doesn’t get invitations to have play dates. What he does understand is that Ava and another kid his age are going to get together and have fun, and that he is not invited. If this wasn’t heartbreaking enough, while Ava was away, I caught him watching videos on his iPad that he and Ava had made while playing sometime before then. He was literally interacting with the Ava on the screen as if she was there in the room with him.

At that moment my heart was literally breaking. I have a real soft spot and sincere empathy for Wes in these moments in particular. I think its because I know that he truly longs to be accepted and included, but does not have the skills and awareness to know how to do this. I also haven’t figured out how to balance the many requests for Ava to have play dates with the lack of requests for Westli. Taylor and Liv made this easier since they were so bonded to each other. Liv usually got the invitations, but wouldn’t go without Taylor. Ava does not have the same relationship with Westli. So much so, that when I told her the story above, about Wes “playing with her” on video, she was like ::shrug:: and went on to tell me a story about her friend’s house.

I’m not sure now which broke my heart more, Wes’ sadness and disappointment around being left out, or Ava’s dismissal and lack of empathy for his sadness.

This is truly one of the hardest parts about parenting children with special needs.

Lucky Leprechauns

Westli LOVES green. So it seemed extremely appropriate that we celebrate the luck of the Irish, traditionally associated with green in the U.S., that also happened to fall on a Wednesday… traditionally associated with W-W-W- Westli in our home. Our little Leprechauns were very busy. They crafted a rainbow paper chain and a pot of gold, made havoc out of the box of lucky charms we purchased and threw streamers all over the house. We knew it was Leprechaun mischief because they left their footprints on walls, doors, windows, and the toilet seat (where they turned the water green AND sparkly!) They also turned the water in Wes’ cup green! Shenanigans were had! They even flipped over our rumba, Henry, so he couldn’t clean anything up!

Wes got such a kick out of most of it. But it did make for a rough day. These kind of things are always a double edged sword around here. While he is excited about “holidays”, he just can’t really handle the changes or disruptions in what he normally expects from the day. We vacillate from the extreme celebrate of these days to no celebration in hopes of not throwing him off. I wish that we could find a nice balance where there is just enough celebration to keep him overjoyed and rewarded for having interest and happiness, but not so much that he can’t function for the whole day. Perhaps one day we will find it.

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.

Holiday Flicks

Since there is little else to do, we have been streaming all kinds of holiday flicks. Some I have seen every year for forever, like a Charlie Brown Christmas. Some I have never seen, and most, I haven’t seen in a long time, such as Miracle on 34th Street. I turned it on (the version with the cute little girl that played Matilda) and watched intermittently with Liv who was drawing on their IPad. Hopefully this isn’t a spoiler for you, but somewhat near the end, the guy asks her mother to marry him with a very sparkly diamond ring. This is the moment that Wes tuned in. A minute or so later he ran screaming from the living room - Wes is fervently against the concept of marriage- I think it is PTSD from a moment on third grade when he “married” his classmate Phoebe on the playground at recess and got a detention, it took us two years to understand that when Wes says “married” he means “kiss”. Anyway, if we want to make Wes get all out of sorts, we pretend to make obnoxious kissy noises. Once in a while we forget he is in the room and he catches is actually kissing. It used to be kind of funny the way he would run to avert his virgin eyes, but now it can lead to a full melt down. Anyway, I took the photo above the second time he popped up during this movie… yup, right at the end, when they kiss inside their new home!

We took these while working on our Home Alone Keven faces.

It was hard to hold still enough for my camera to process in the dark!

Holiday routine

Wes thrives on routine. Holidays disrupt every notion of routine. It’s a recipe for stress and frustration that we deal with every single holiday. What do I mean?

Well, first of all, today is a Monday when Wes would normally have school, but there is no school until January 5th… “winter break”. It’s enough time for Wes to forget his “routine” and make back to school the first week just as miserable as life right now. Then there is holiday hype. Wes really gets excited about holidays. It doesn’t really matter which holiday, he likes, no loves, them all. In his mind, we should celebrate them all with the same fanfare.

It looks like really big highs-excitement and happiness- and then really big lows-fits of tantrums, screaming, crying, and misery. It feels like the highs are fewer between and the lows are louder and longer. All of these ups and downs wear on all of the rest of us. We get shorter and less patient.

It all makes holidays really tough here, not just the holiday, but many days to the lead up to them and many days after.

Right now, for example, I’m in my room listening to Wes’ 4th or 5th tantrum in the last 2 hours. And just like that, the screaming stopped and he is laughing hysterically.

Good byes

Ms Laurel

The only thing that has helped her has been her weekly tutoring sessions with Ms Laurel. After we independently sought out and paid for dyslexia diagnosis, we were given a tutoring referral. Ms Laurel was a retired K-12 teacher. She met with Ava via Zoom every week since early March. She has been a constant and routine educational contact for Ava through all of this. She didn’t come cheap, but her time was very valuable to us.

September 15th, Ms Laurel let me know that she was given a diagnosis that required treatment that might interfere with tutoring. Although she offered to refer us to another tutor, we decided that flexibility was no problem for us.

About three weeks ago she missed a session, and a few days later her daughter in law sent a text that she had been hospitalized. Yesterday we learned that she passed away on Wednesday.

Last spring, just before the only thing anyone could talk about was COVID, Ava was diagnosed with dyslexia. I learned that dyslexia is not a medical diagnosis, nor and educational diagnosis. Namely because we don’t understand it well, and no one wants to pay for therapy or treatment of it. However, it has had significant dramatic effects on Ava’s ability to read, write, function in school and developmentally progress. Furthermore, because no one wants the responsibility of paying for it or its therapy, the school has avoided developing plans for her to have success. We finally did push through an IEP during the COVID shut down, but she has not benefited from this at all in distance learning.

We haven’t known Ms Laurel very long, but she was a light in a dark time especially for Ava. Ava has shown progress since she started working with Ms Laurel too. We will miss her deeply for the gifts that she imparted on Ava in the short time we have been acquainted. Goodbyes are never easy.

We wish to thank Ms Laurel, even though she will never have the opportunity to hear our gratitude.

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.