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.

Winds of Change

Taylor as King george III in his class to the past presentation. He spent hours gluing each gem to his homemade crown, sewing his cape and hair, and learning to act like a king!

The winds of change never really stop blowing, but I think sometimes they are more noticeable than other times. Right now is a time of much change around the Stanis house. We tend to notice change around this time of year as we round the kids birthdays which are inevitably tied to their annual medical check ups. While no one has any major medical stuff going on, it seems to me that these “preventative” visits always stir up the dust. For example, Taylor hasn’t had an eye exam since we left Wisconsin. At that time he and Wes had slight far sightedness that was actually fairly normal for their age. Still the doctor wrote a slight prescription and all were fitted with glasses. Wes quickly broke his, and Taylor went rogue, choosing simply not to wear them. Well Taylor failed his vision screening at the annual check up. Guess who is getting reacquainted with his glasses and an eye exam?

Liv as Harry Truman and their friend Okami as Japanese Commander Yamamoto Isoroku, class to the past presentation.

My insurance, through my employer, not surprisingly finds it important to support its own industry (yep, I’m a nurse, and I work for a major hospital). I don’t normally get too upset about this, but it seems like everything at my employer takes months to get into, and, even though my insurance doesn’t require it, everyone seems to require a referral. It makes getting services really annoying. So until April, hopefully Taylor’s old prescription will help him to see. I mean, its only vision, right!?!

Wes and Ava were playing in her room when suddenly there were screams and tears. Wes-0, Ava’s bed-1. The details around how the bed gave Wes a black eye are a bit unclear… as is often the case when it comes to Wes… choose your own adventure…

Ava is really excited to join Tay and Liv at CAIS next year. In the photos above, she is working with students at CAIS during an open house day. Her teacher this year says that she cannot hold her attention for more than 60 seconds in class, but for hours during the open house she was attentive and fully engaged.

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!

Happy 4th of July!

*Coco is not pictured because he spent the day hiding and running from the distant fireworks. He is not a fan!

Special Ed

My kids are unique.  Often times I really love that they are so unique.  No one has a giggle like Taylor, and no one has a smile like Wes.  No one is as kind, thoughtful, and loving as Alivya.  An no one can ham up a photo like Ava!  Ok, well I might be a little biased. 

Our kids get a lot of attention because they are twins, not just a pair of twins, but two pairs of twins.  They get attention because each pair consists of a boy and a girl.  They get a lot of attention because all four were born very early; 14 and 11 weeks early.  They get a lot of attention because two have autism and the other two have asthma.  

Some of this attention is good, very positive... some, well, very negative.  I have written a lot about IEPs over the years... Taylor has had 5 and Wes 3... but, for some reason, this year has taken its toll. 

I am so utterly disappointed by this system that I can't find the words to explain myself.  Just like this year, I have no idea how we will get through next year, but some how, I know we will... and I won't have to compromise what I know to be right for any of my children in order to do it.