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.

Happy 15th Birthday Tay and Liv!!!

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.

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.

Pronouns

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.

To my Dad at 80

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.

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 ;)

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.

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.

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

Faces of Liv

Having teenagers has been an interesting adventure!

I know I could die for this, but it will be worth it!