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!

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.

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….

Fudgy