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!

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.

Lucky Leprechauns

Westli LOVES green. So it seemed extremely appropriate that we celebrate the luck of the Irish, traditionally associated with green in the U.S., that also happened to fall on a Wednesday… traditionally associated with W-W-W- Westli in our home. Our little Leprechauns were very busy. They crafted a rainbow paper chain and a pot of gold, made havoc out of the box of lucky charms we purchased and threw streamers all over the house. We knew it was Leprechaun mischief because they left their footprints on walls, doors, windows, and the toilet seat (where they turned the water green AND sparkly!) They also turned the water in Wes’ cup green! Shenanigans were had! They even flipped over our rumba, Henry, so he couldn’t clean anything up!

Wes got such a kick out of most of it. But it did make for a rough day. These kind of things are always a double edged sword around here. While he is excited about “holidays”, he just can’t really handle the changes or disruptions in what he normally expects from the day. We vacillate from the extreme celebrate of these days to no celebration in hopes of not throwing him off. I wish that we could find a nice balance where there is just enough celebration to keep him overjoyed and rewarded for having interest and happiness, but not so much that he can’t function for the whole day. Perhaps one day we will find it.

Titanic Returns

It’s been a really long time since Taylor has said or done much with his Titanic obsession. But recently his Lego miniature model fell and when repairing the damage, a light was reignited.

This knex model spans nearly 5 feet and includes an ocean simulating platform allowing it to sink and split in two! I’m happy to see him creating again!

Holiday Flicks

Since there is little else to do, we have been streaming all kinds of holiday flicks. Some I have seen every year for forever, like a Charlie Brown Christmas. Some I have never seen, and most, I haven’t seen in a long time, such as Miracle on 34th Street. I turned it on (the version with the cute little girl that played Matilda) and watched intermittently with Liv who was drawing on their IPad. Hopefully this isn’t a spoiler for you, but somewhat near the end, the guy asks her mother to marry him with a very sparkly diamond ring. This is the moment that Wes tuned in. A minute or so later he ran screaming from the living room - Wes is fervently against the concept of marriage- I think it is PTSD from a moment on third grade when he “married” his classmate Phoebe on the playground at recess and got a detention, it took us two years to understand that when Wes says “married” he means “kiss”. Anyway, if we want to make Wes get all out of sorts, we pretend to make obnoxious kissy noises. Once in a while we forget he is in the room and he catches is actually kissing. It used to be kind of funny the way he would run to avert his virgin eyes, but now it can lead to a full melt down. Anyway, I took the photo above the second time he popped up during this movie… yup, right at the end, when they kiss inside their new home!

We took these while working on our Home Alone Keven faces.

It was hard to hold still enough for my camera to process in the dark!

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!

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.

Clorox

Before the pandemic, approximately every six months, I received a shipment of Clorox wipes as part my subscribe-n-save subscription on evil Amazon. I know it’s evil, but I live on a budget on borrowed time, so some evils are necessary. I found if I purchased my cleaning products this way, with a reoccurring replenishment, then I was better at using them. Thus, my bathrooms were clean with sparkling toilets and showers/tubs. And with a big child whose potty skills are less than apt, well we find an abundance of need for the use of harsh wipes! Of course I never used as much as I had, so I found myself at the beginning of a pandemic of a novel virus overstocked with Clorox. Who could be happier!?!

Fast forward about three months of mad daily cleaning, and my stockpile was nearly gone (and not as much stockpiled as I had thought). I decided to leave the Clorox on my list, even though I was fully aware that it would be quickly out of stock for awhile. Every month it told me it was out of stock and I deferred it to the next month. Well, today it came!!! I got three fresh new bottles of disinfecting bliss!!!

Our COVID routine has transformed with knowledge, social distance, and lack of access to abundant Clorox, so I will likely continue with Lysol spray and reusable cloth in favor of saving these wipes for Wes’ messier accidents. I sure am grateful to have them again!

I haven’t tried to reload in gloves yet. We still have a little more than half a box, but that need will come soon. Fingers crossed 🤞🏼 that they will be in stock when we need some. That thin glove is often the only think that keeps us from loosing our lunch! There is a really good reason that most almost 12 year olds are potty trained!

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….

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.