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.

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.