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.

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.

More Cake

Wes demanded that his cake this year be “death by chocolate”. So, I submit, artery clogging, widow maker, diabetes instilling…. Death By Chocolate!!!

I filled the middle with whipped cream icing, chocolate syrup, and Wes’ favorite candy coated M&Ms.

Then I covered the whole cake in made from scratch chocolate whipped cream icing!

My MIL gifted me for my birthday an attachment for my Kitchen Aid. It warms and tempers chocolate! So I made chocolate truffles to decorate the cake! Nailed it!

Ok, I need some work, but for my first attempt, not bad. They taste delicious and look amazing on the cake!!!

I made a She-ra portrait for Ava using dark and white chocolate. For Wes I did a Voltron chocolate portrait.

Jon made homemade chocolate ice cream from scratch to aid in the chocolatey death ☠️

Baking Merry

The last month FLEW by! I have wrapped up my first term of my graduate program! It feels really good to be able to say that and still feel firmly on my feet! It was a lot of work, and I neglected several preferred things, but its in the bag! Now as we turn our sights towards the holidays, making merry and bright, and saying goodbye to the year… I’m finding myself with a wee bit of time again.

While I was working after Thanksgiving, Jon and the kids kicked off our holiday season by putting away fall and brining out our holiday favorites. Interestingly there where a lot of things that didn’t make their way out of boxes. It felt like the spirit of 2020 had seeped in and dampened everyone’s hustle and bustle.

So slowly I have been ordering, receiving, and wrapping holiday (and birthday - at the Stanis house) gifts. I’m pretty proud to say that I have everything wrapped that is here, though I am still waiting on a few stragglers to come in.

Jon baked bread to share with our neighbors, a holiday tradition from his childhood. It somehow seems like the right time to bring those traditions back in a year when so much feels wrong.

Yesterday I whipped up some sugar cookie dough, and the kids helped roll it, cut it, and bake it! They did it with pretty much only verbal cues. Which was great. I always remember feeling so physically tired after making cookies in the past! Tonight we will apply icing and sprinkles to bring them full circle. Should be equally messy, right!?!

For me, it doesn’t really feel real that it is Christmas time. My body is still quite full of anxiety over the state of our government, the state of public health, my children’s mental and social health, the questions that remain unanswered about the near and distant future. I feel fortunate to have built in avenues of reliable and supported information, the ability to have stable housing and income, a spouse who always works from home, and lots of technology and knowledge to help my kids through distance learning; just to name of few things I am thankful for. I still live with an endemic level of anxiety and concern for our world.

The weight of this year has been hitting me a little harder in the last few weeks, probably as things have slowed down a bit for me.

My experience on the front line:

I set out two biohazard bags and two clean gloves. Then I tied on a scrub cap. Next I removed a clean disposable gown which I placed over my head, threaded my thumbs through and tied around my waist. Then a pair of clean gloves that slip over the gown at my wrists. I removed my regular surgical mask that I wear all day, and placed my plastic disposable container, with my N95 mask suspended in it, over my mouth and nose. I pull the lower strap up over the container and then my head down to my neck, then the second strap. I cover the container and set it aside. I pinch the metal strap over my nose and breath in and out deeply and slowly, testing the seal. I place my goggles that I wear in every room on next. I test the seal again. I adjust the metal strip when my goggles fog a little. Test a few more times until I am satisfied that the fit is right and the seal is solid. Finally I place the strap of my plastic face shield over my head.

This process has already taken me nearly ten minutes. I’m thinking through every step carefully. I don’t want to screw this up. One error at this moment brings this thing home. It puts my family at risk. I’m not thinking about myself in this moment, I am totally thinking about my kids.

I am hot as I walk into the room. The family on the other side of the door is pleasant. They look tired, like all the moms and dads I see. She has a mask sitting just below her nose covering her mouth and chin. Her baby is swaddled and laying on her lap in the bed. His mask covers most of his face. A bushy beard breaks around the edges on the sides and bottom.

I wonder what they think of me as I introduce myself and explain my business in their room. What would I think if someone walked into my room looking as I do now? They are happy to have me there, they have a lot of questions. The baby is completely asleep. I’m relieved in one sense, I will not have to spend a prolonged period of time within six inches of this mother’s face, but I might have to don everything again and come back. My mind sighs. I start describing the expected feeding behaviors of their baby, and the mom interrupts me to share that her baby is special and already exceeding all of these expectations. Of course she is. I spend about 45 minutes talking and answering questions. My face is sweaty. The shield, or maybe the goggles, or both, are starting to fog up.. my mind focuses on that for a second and I think it’s time for me to get out.

As I finally exit the room, I can’t seem to pull hard enough to break the tie of the gown. I curse in my head as I struggle to pull in the right place. I take a breath and slow down, careful to wrap the gown into itself so as not to shake around any droplets. I get one hand out, then with some effort, the other. I mindfully place the ball gently in the waste bin at the door. As I exit, I hit the sanitizer bottle squirting a huge glop into my hands. It takes a bit for the sanitizer to dry enough that I can put on the clean gloves I had laid out before I went in. As it dried, I thought about the order of doffing what was left. Once my gloves were on, I grabbed a new cavie wipe from the bottle and carefully remove the face shield so as not to touch the mask or my cap. I clean the shield and place it in my paper bag. Next I do the same with my goggles. Then I uncover my plastic Glad-wear. I place it over my face. I reach back for the lower strap and bring it up over my head and around the entire container. Then I repeat with the second strap. I place the cover on and press it tightly to seal. Months ago I drilled three holes into the container for ventilation to allow anything in it to dry. I’m grateful today that I prepared this so long ago. Finally I remove my cap with one hand, while holding the bio bag in the other. I am careful to try not to touch the sides or the edges. I compress the bag a little to let out some air and seal it as well as I can with one hand. I take off the gloves, sanitize and put on clean gloves again. This time I open the second bio bag and invert it, pulling it right side out with the other bag cleverly contained with in. I seal it, doff gloves, and sanitize again.

Its been about 90 minutes since I started, but I think I did a good job. I grab a new surgical mask that I will wear the rest of the day. I store my PPE and place the bio hazard bags in my bag to take home to wash. Disposable hats (bouffon caps) are on low supply so the hospital doesn’t recommend using them for routine care of COVID positive patient.

I sent Jon a text to have my house robe waiting for me when I get home. Its our code for “I’m somehow interacting with someone who is or is suspected of being COVID positive”. He places my house robe in the laundry room that connects our garage to the house. When I pull in the garage, he opens the door. I step in and use the heal of my shoe to close the door. He opens the washer. I give him my phone, lunch box, drinking cup which he will wash right away. I strip down and everything goes in the washer, including the scrub cap that I remove carefully from the bags, avoiding touching the contaminated insides. I put on the robe and make my way to the shower. I scrub and douse in soap and water. My robe and towels go into the washer next, and everything is washed immediately on sanitize. I leave my shoes there for several days when possible.

I don’t get to know if these measures are enough to keep us safe, but the routine is the best chance we have to keep COVID at work. I want so desperately to protect my family, that I take the time to think through it, to plan my moves with intention. This patient experienced only mild symptoms, but many on our unit have been quite ill. A few are lucky to have made it. COVID is devastating to pregnant women. Most of them who have been so ill, also delivered prematurely. This has turned out to be somewhat protective for me as a lactation consultant. When they deliver prematurely, I don’t end up needing to spend time at their bedside, I can provide education on the phone and through bedside staff. Still, it’s heartbreaking to watch this play out on the sidelines. I am grateful for the vaccine that is now being administered to the most at risk of our ranks. I don’t know when my number will come up, nor when my family will be able to receive it. I don’t love that it had to be rushed, nor that long term effects can’t be studied. I don’t love having to be one of the first to get it, but I will get it, and I will take these unknowns. Because the alternative is to let this virus continue to ravage the world. When healthy people get vaccinated, it protects the most vulnerable among us.

May 2021 bring us all peace and humility once again.

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!

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.

Trampoline

During the wildfire our emergency plan involved taking up the offer of my friend and coworker, Kim. When I explained the plan to Wes, he remembered that Kim had a trampoline. After that, he kept asking when we would get to “yellow”, meaning level 2 evacuation warning. He didn’t think of it as a scary, he was waiting anxiously so that he could jump on the trampoline. I wish every child could have felt as immune to the emotional stress that the fires cost. At the same time, I want Wes to learn to empathize with others and that means that he has to learn to feel the real emotion.

After the fire danger subsided, we lived with air quality that was down right hazardous for about a week. Every single day Wes asked if we could go jump, and I told him that it wasn’t safe, but I would ask Miss Kim if he could go there to jump when it was.

Last night, he finally got to jump! He and Ava had a really great time.

I am so appreciative of Kim and her family who extended an offer to help us in case we needed somewhere to go. I’m so grateful to Kim for having us over to jump on their trampoline. It may seem like something small, but it was huge for Wes.

Sp.ed. and other ramblings

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….