Sp.ed. and other ramblings

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

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….

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

Pronouns

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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

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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

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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!

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.

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!?!

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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…

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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.

To my Dad at 80

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Dear Dad,

Today is your 80th birthday. Even though you’ve been gone for so long, I miss you like it was just yesterday. If you were here, there is so much I would share with you.

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Every day I regret that you never met Ava and Wes. Ava is a spit fire, I think she would have been your favorite. I can picture you in my most vivid imagination tapping her in her opposite shoulder, tickling her, and teasing her. She looks just like me, but got all of Amy’s sass ;)

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Wes would have worried you, he worries us all. Still his contagious laughter and giggle would have swept you up. I can see you out in a boat trying to fish, but having no luck because Wes and Ava cannot be quiet.

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On the boat, Taylor is your man. Yup, “man”, I said. At 13 now, he has really grown into his own. He is tall (at least for us Massey’s) and only just beginning to grow. His voice has changed and his upper lip is covered in a fine peach fuzz. Taylor is quiet. He soaks in his surroundings and contemplates quietly in his time. I know how worried you were for him back when he was 1 and still quite sick. But all of that is past now. He likes to help us around the house, especially if it involves power tools.

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I don't think Liv would surprise you too much. She works hard, does so well in school and loves to draw. She is funny and smart. You would believe that she was ever that tiny baby you met!

At 80, I would have preferred so much more for you here with us. Of course now there are so many of your loved ones with you on the other side. It seems selfish to wish you were still here. Yet I do.

Here is to being in a better place, even if it’s away from us.

Much love,

J

Do you want to build a snowman?



Yes, I know its summer, well spring... I know this even if mother nature would rather it stay Frozen! We were riding in the car on our way to pick up Jon's bib number on Saturday when our children broke out in song.  The second round was not a good as the first spontaneous round... but you get the idea of the crazy, awesomeness that can be our family.

My kids, like nearly every kid everywhere, are totally obsessed with this movie.  They love Ana and Elsa and the snowman.  Often times I hear them role playing and pretending to be the characters.  I am going to have to find time to watch this movie if I want to know what it is that my children are up to. 

Kids do say the funniest things


I'm in the kitchen trying to tidy up after a long week, and Ava comes out of the bathroom...  "Momma!!!!!  There was corn stuck to my poopy!!! Did you hear me?  Corn!!!!"
I'm sure she wasn't seeing things... we had corn with our dinner last night... 

Westli: "I want to open the umbrella" as he hands me my umbrella. 
Me: "No, we are not going to do that right now Wes."
Westli:  "Come on now Buddy..."

I bought Taylor some new shoes.  His first pair with laces as he learned how to tie them in the last couple weeks.  He was whining that he couldn't get his foot in it, so I showed him how to pull the laces so that they were loose enough to get his foot in.  Then I told him to push this foot on my knee hard so that his foot would drop into the shoe... "Its okay Taylor, you can push hard on my knee." Taylor: "I know, you're a girl!"