Goodbye FB

I gave up Facebook. It was hard because there was a lot of history there that I was hanging on to. My mom’s memorial page, my former colleagues from Bellin, a few acquaintances who I really only know through our online presence, but have been there during the worst times in my life. Why give it all up? Because I have real issues with the operations of Facebook and the future it envisions. I also gave away years of my life mindlessly scrolling through mostly ads while missing the posts I actually want to see. I also found myself sucked into ads that only took my money here and there while targeting me with things I never needed. Besides Facebook is just another annoying form of a popularity contest. How many “friends” can you get? I much prefer meaningful interpersonal relationships.

I will miss the memories that popped up of my children over the years, but I won’t miss all the sad stuff. I have also found myself asking why I would have posted this or that. Which I took to be a sign that it is time to move on to my post-Facebook life.

Next stop Instagram, since that is pretty much just Facebook in all but name.

The Barriers 2nd edition

Its been a while since I had a moment to jot down my thoughts here on the ole blog. I got frustrated today, and decided to carve out some time. I was thinking “the barriers” would be a great title for this blog as I logged in. Low and behold, I already used that title… ironically, it was my most recent blog entry!!! Hahaha, sigh… I could probably stop right there.

So I finally got around to calling to make an appointment for my gender expansive kid, and within 5 sec I was asked to hold. Then when they came back to the line, they wanted to know when the referral was sent. My referral came from another parent of a gender expansive child, so it didn’t come from our doctor. It’s already taken me like four months to make this call. I have three jobs, four kids and I am working on my Masters degree. What can I say, I’m a little bit busy. The lady on the phone sighed with irritation that I didn’t have a “referral”. Obviously she has never experienced a delicate situation where the individual care one receives is paramount. This particular doctor has expertise in gender expansive issues and has, I’ve been told, provided sensitive care to gender expansive children who might just be fearful of the very care they require.

I was empowered to make the call today after attending a lunch and learn about inclusive practice at my own institution. I thought, “I really have to do this and stop procrastinating. It’s the right thing to do.” The irritated woman informed me that not only am I required to have a referral (not by my insurance, but by their office) but that the referrals, another sigh, are processed in the order in which they are received. They get “so many” requests for appointments. Obviously my business, is not of particular importance, get in line.

I hung up. Frumpy. Now I have to make yet another call and wait some more, all while trusting that medicine will work the way it’s set up to… which I know, it won’t… inevitably, I will be calling again, and again… It is a wonder how anyone navigates this totally messed up system!

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!

First day of school

My emotions are all over the place today. I desperately needed some time in my house, without my fabulous but sometimes a little smothering, children. I don’t use the word “desperately” mildly. At the same time, I feel like I’m sending my children into battle. The enemy, a tiny microscopic set of nucleic acids disguised as obnoxious, ignorant, and often petulant flag waving deniers who care more about their “freedoms” than health and the science that we know works. I did not send them into battle unarmed though.

Double masked, goggled, and sporting sanitizer, my kids have the privilege of being vaccinated and highly knowledgeable about everything that we know will protect them. I just hope that it is enough.

Military State

This morning as I arrived at work, I was literally greeted my an Army National Guard in full fatigues. The significance of his presence was not lost on me. It means that we are loosing the war. It means that my six months of extra shifts to administer COVID vaccines, failed to protect lives and end this thing. It means that my day will be more exhausting and my family more endangered just because they are my family. It means that more lives are being lost and forever changed by a virus that we could have stopped. COVID 19, today, is a PREVENTABLE disease.
My eyes welled up as I rode the tram up. Not going to lie about how this moment made me feel. It hurts in so many ways.
I feel like I’ve seen this movie, I can’t really believe that we are at this part. What next?
I haven’t asked in a while, but please, can you take your loved ones and go get vaccinated? If not for me and all my fellow health caregivers, then for our children who can’t yet?

Pie

I read a Facebook meme today that asked if “your mom made you a cinnamon and sugar treat with leftover pie dough when you were a kid?” I thought “no, but my mom also didn’t make pie”. Then I remembered she did try to make Pumpkin pie for Thanksgiving one year. She bought a frozen crust, filled it with store bought pumpkin filling and baked it. It took a really long time to bake, and she was frustrated, but we didn’t know what the problem was. Later she couldn’t slice the pie either.
Finally we discovered the reason for all her woes. She never took out the paper at the bottom of the frozen crust.

Lucky for her, I married a pie man. She never had to make pie again.

Plums Sweet Juicy Ripe

Right now our plums are perfectly ripe, sweet and juicy! Sadly it’s 100 degrees outside, and many fell already since we cleaned up this morning! The bees like it though!
I wish for everyone to have an opportunity to enjoy a plum right off the tree! Amazing! The one pictured is one of the biggest this year! It was delectable! 🤤 yummy!

Tidal break

Jon and I took a well deserved break yesterday and went whale watching in Depoe Bay! While we tried to get photos, it didn’t work out too much :( Just a lot of ocean! It’s crazy to process the enormity of the animal that we were seeing! I quite enjoyed being on a boat on the open sea! (One lady on the other boat did not!)

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.

Proud of Me

Today marks 3 weeks of getting back on my bike for work after a pandemic related hiatus. It wasn’t/ isn’t easy to get up that much earlier to accommodate the extra time required, or to decide to risk public transport with the delta variant. Still it feels really good to get some really good exercise in before work. It starts my day in a good direction; gets moly blood pumping and the oxygen flowing!! Proud of me!