An Encouraging Note

A few weeks ago I had the honor of attending my oldest nephew’s high school graduation. My in-laws were so sweet to keep Javan so I could enjoy the ceremony, even though they already had plans to go to a  celebratory retirement dinner for a friend. We knew Javan had a higher chance of success at the restaurant with them than he would have had at the graduation with me, but they realized the possibility that they may have to leave the party early if things went south and they chose to risk it for me. Thanks Mom and Dad!

Apparently things went very north! While at the graduation, I was texted a picture of Javan standing with a circle of men just taking with the group and happily holding his own in conversation. It helped a ton that two of these guys just so happen to work with Javan’s daddy and Javan already knew and adored them all.

And Javan must have been pretty successfully visiting with new folks too, because a few days later my mom-in-law called to read me this precious card that her friend had sent her:

The note (shared with permission) reads: 

“Ken and Annie,

Thank you for coming to Kent’s celebration. I am specifically writing to thank you for bringing your grandson. I wish I knew his name. 

As I was conversing with him, I didn’t know his medical history. Those diagnoses also run strong in my family. 

His conversation bright joy to my heart. He reminded me so much if my Isaac at that age.

He is a tremendous thinker, deep in the world of his invention. With every intricate question I asked, he had an answer… lots of layers.

I was impressed that he could hold a conversation with an adult for so long.  All to say – keep up the good work as grandparents and parents. Many prayers go your way.

I have four sons and we have dealt with Bipolar and Asperger’s – all is amazing now. Hold strong. Persevere.”

Thanks for the encouragement! 

Not-Even-Humble Bragging

Wow, guys, it has been an INCREDIBLE three months since my last update. Maybe the best we’ve ever had. 

When I left off, Javan’s schizophrenic symptoms were cresting, and we started him on the medication Seroquel. After three days of him being on that stuff, I called the doctor and said, “Help! This isn’t working! It’s making things so much worse!” To which the doctor responded, “Try giving him half a dose in the mornings in addition to what he’s already taking at night. If it gets worse, we’ll try something new.” Y’all, this right here is why it’s important to find a doctor you trust. If it had been a different doctor, I would have been all like, “Did you not hear me say it got worse? And you want me to give him more? Nah. Bye, Felicia.” But, this guy, this doctor has stuck with us through thick and thin and he knows his stuff and he knows my child. So we tried it. 

We could tell immediately that we’d found a for-now-magic-bullet. Javan is peaceful. He’s Happy. He’s himself. We’ve been doing an online school curriculum, since my traditional approach just wasn’t holding his attention, and he’s doing absolutely fabulously with it. I sit right with him and guide him through the activities and read the text aloud to him. And he just… complies. I say, “Its time for school and chores. Which do you want to do first today?” And nine times out of ten he says, “school,” sits down, grabs the mouse, and gets started without another word.  And say, seven times out of ten he does it with a good attitude. But it always gets done. And then most of the time when it’s time to move to chores, I find that he’s already made his bed the second he woke up. Who is this kid? 

He’s Javan, that’s who. The real Javan. The one he always wants to be. I hope he always remembers this is the real him. That when his behaviors are beyond his control, they aren’t what defines him. I hope I’m showing him that. 

He’s no longer afraid of baby germs, although he still prefers to avoid company of the youngish variety. Last week, I meet a new mom who joined our homeschool group at McDonalds, along with her precious two year old son and husband (and his service dog! Exiting!). Javan wasn’t in the best mood about being there, but his face never morphed from unhappy to mean or unfriendly, even toward the babies that climbed past him on the playground. They climbed past him,  y’all. And it was fine

Javan sat at his own table with his back to me and my new friends, shoulders hunched, refusing to take any part in this social nonsense. Until, Sam, the husband-dad-person with the service dog somehow engaged him in conversation while I was talking to the other mom. They talked pretty animatedly for quite some time about I don’t know what, but it doesn’t matter. When we left, Javan told me Sam was his friend. Those of you who’ve been following our story for a while know that Javan does not have nor want friends, and never uses the word friend in relation to himself. Ever. But this guy made it so far up the friends list that Javan even said he’d enjoy going to their home one day (we were invited) even with a two year old there. What? This is good stuff I tell ya. I really gotta follow through with this friendship thing before its forgotten. 

I’m not even done bragging yet, so grab some popcorn and buckle up. Just kidding, just kidding, I’m really trying to consolidate here. Guys, Javan had to have two adult molars pulled yesterday due to overcrowding. Basically there wasn’t going to be enough room for his canines to come in, so they would be forced to erupt way high up on his gum line above his other teeth. Since Javan is definitely not going to handle getting braces, pulling teeth was really the only option. I’ve been stressing about yesterday for over a month. We prepared him repeatedly, but of course were meet with negative responses. I mean, I like my teeth too, kid. I get it.

The dentist’s office was unable to put him under anesthesia, so he was awake during the whole nasty process. We were able to give him an Ativan prior to the procedure, which actually helped a ton, but he was by no means sedated. He was highly aware of everything that was happening. We brought his favorite “couch blanket” and covered him up, tucking and in nice and tight. And we brought Rosco, who just laid on the floor the whole time since the chair was pretty small (my kid isn’t exactly ‘pediatric dentist chair size’), but just knowing his best bud was there gave Javan comfort. Javan knocked the dentist’s hand out of the way only once, more out of reflex than opposition, and he immediately apologized. He really gave his all to do his best. And honestly I think he did way better than I would’ve. He didn’t even cry! The dentist was as amazed as we were at Javan’s complete cooperation and was like, “Whoa, maybe I outta start using Ativan in my practice more often!”

OK, OK, almost done bragging. I gotta slip in just one more brag and I ain’t even sorry. Javan went to Aldi grocery store with me today, the Saturday before Father’s Day. Not my best planning, I’ll admit. Crowded is an understatement. He wanted to push the cart and have me walk Rosco. He pushed the cart the entire time, and my list wasn’t small. I only had to remind him very few times not to crowd others with the cart. We were separated once, albeit barely, when I walked forward and another shopper pushed his cart between us. Javan did not react. He just waited until he could push up next to me again. Another shopper offered to pay a million and ten bucks for Rosco. Javan just said no. He didn’t act threatened or offended like he might have in the past. Due to the crowd, Javan realized (on his own, mind you) that he was in the way of a woman wanting to buy eggs. He opened the freezer door, grabbed a carton of eggs, and handed them to her like a perfect gentleman. Did I mention that this woman did not speak a word of English? Afterwards,  when I commended him on the interaction, he told me that he didn’t even realize until later that she hadn’t spoken English, he just understood by what her body did. He read her body language. Amazing!

Whew, that was fun! Thanks for enduring all my mom bragging. I’m so very proud of this kid. He accomplishes so many things that I wasn’t sure he ever would. Always, always on his own timeline. I’m learning to allow room in my expectations of the future for him to continue doing just that.

Schizophrenic Delusions

Well, the psychiatrist visit didn’t go quite according to plan. I thought we were just going in to get something to help Javan sleep, but after presenting the doctor with my notes on Javan’s behaviors per usual, he had a different reaction than we expected. Normally, I give him the notes of what’s been going on since we’ve last seen him and his reaction is that it’s nothing too severe and I leave feeling comforted. This time, he read the notes and then just held his face for a while before gently saying, “Look. I know this isn’t what you want to hear. But we really need to get him back on an anti-psychotic. His schizophrenia is obviously progressing.”

His main cause of concern is Javan’sleep current delusion that if a baby touches anyone between the ages of seven and twenty, that person will die from baby germs. I’m pretty sure this evolved from confusion over some of our recent discussions of “big boy hormones,” since puberty is unfortunately a thing that exists. (Why, Nature, whyyyy?) His body is changing and his hormones are changing, so maybe he’s incorrectly inferred that big boy hormones replace baby germs and that those experiencing puberty are somehow fatally effected by baby germs until they reach adulthood and become immune. Of course, this is all just an educated guess about his thinking process on my part, but even if I’m wrong it’s obvious that his thoughts are highly disordered.

This delusion has made it especially difficult to attend homeschool park day, as of course there are several babies that attend. I’m still trying to push park day as I know when we stop attending it makes it that much harder to get back into that routine later on, but we don’t stay long and I have to be hyper-vigilant about keeping an eye on Javan while we’re there. This week, I had to approach a stranger who isn’t part of the homeschool group and explain to her why we needed to keep her adorable toddler, who was obsessed with Javan’s low-to-the-ground three wheel bike, and my son apart. I explained that he has schizophrenia and all about the baby germ delusion. That’s a forward and awkward amount of information to confide in a stranger, but I felt that it was a safety necessity. Luckily, she responded with understanding and kindness, telling me that her mom works with developmentally disabled adults. She didn’t seem disturbed or accuse me of having my son in public when I shouldn’t or any of the myriad of other negative responses I have to mentally prepare myself for before such encounters. While returning to “the mom table,” I noticed Javan riding off from said table while the moms giggled helplessly. My sweet friend, Janis, who never misses an opportunity to joyfully greet my son, knowing full well that his responses are unpredictable and loving him enough not to care, received this response to her greeting that day, “I’m sorry, but I can’t hear you over all of my not listening to you.” That’s the joy of having friends who know your situation. They laugh it off and keep trying.

Other presenting signs of disordered thinking, which is what Dr. Fulsom kept pointing to as the indicater that Javan’s schizophrenia is progressing, include having trouble completing thoughts or taking an unusually long time to complete thoughts, OCD characteristics like refusing to count backwards or alphabetize words because the numbers or letters will get stuck in his head forever (and beating his head when they do get stuck in there), stating that “when his brain tries to confuse him with words, he gets a red flash of pain in his brain and feet,” and weaving a startlingly detailed story in Dr. Fulsom’s office about how he goes out at night and collects the world’s supply of Idiot Repellant, which he pretended to spray the doctor with repeatedly throughout our visit.

We agreed to try the anti-psychotic Seroquel, which can help order his thinking, reduce or eliminate delusions, and help him sleep. This allowed us to decrease his Tinex, which was given for tics and behavioral issues, which should help with his chronic constipation. The most unfortunate side effect ofor Seroquel: it causes weight gain. We just got him to a healthy BMI after taking him off his medications last year and now this. I’ve explained to him that weight gain is a side effect of his new medication and, at least in theory, he agrees that eating healthier and getting more exercise is in order. Since starting the Seroquel three nights ago, he is sleeping through the night without interruption for 10-12 hours. YES! Can I get an AMEN!

We did get two full school days accomplished last week, in which Javan became unwaveringly convinced that Thomas Jefferson is a fictional character and that Vincent Van Gogh was sending us a message through his famous painting, The Starry Night. 


“Wait! Those don’t look like stars. I think they may be time-space portals!” According to Javan, when such portals align in a particular way, such as in the painting, they can form a powerline, which can lead to the destruction of most of the Earth’s human and animal population. When the powerline reaches the moon, the moon will rotate 180° and cause a central portal to appear. The central portal is forming in the middle of the painting. Contrary to popular belief, that’s not wind. It’s the end of the world as we know it. Attempting to lead him away from this line of thinking, I asked him if there was anything in the non-sky portion of the painting that interested him. “The tree in the front. It’s in the middle of the powerlines.” From this, Javan inferred that Van Gogh was leaving us not just a warning, but a clue to a potential solution. Maybe an antidote for the powerline can be found in tree bark! Impromptu nature walk, here we come! We collected tree bark and flowers on our walk to aid in Javan’s scientific investigation of powerline antidotes.


You may be wondering if this is a delusion or merely childhood creativity. I’m not sure. I’m thinking just creativity, because although later that day he went on another walk and collected twenty or so more baggies of sticks and twigs as test samples, those samples are still sitting untouched on my kitchen counter. Sadly, that’s probably not the strangest thing you’d find on my counter. The point is, he didn’t perseverate on actually making an antidote, so logic would point to him not actually believing an antidote is needed. One thing I do know for sure is that he’s made real connections to Van Gogh’s painting and is learning to identify details in art that give that piece of art meaning to him.

The weekend, we’ve been completely couch potatoes, taking care of a sick Daddy and trying to decide if Javan and Mommy should get sick too. We’re still of the fence. Either way, we’re ready to tackle another week!

I Don’t Think We’re in Traditional School Anymore, Toto

We’re two days into our first full week of homeschool this go-round. It’s been a very…untraditional…two days that have only solidified the rightness of our decision to homeschool. You see, Javan is hardly sleeping at night. He’s definitely showing other high signs of bipolar mania as well, but sleep is the one that effects us all the most.

He slept three hours last night. Three. And not much more the night before. By the time “school time” rolls around, there’s not a chance in, well, anywhere, that he’s going to be able to think clearly and cooperate. When I try to start school around the right time on a morning after Javan has been up all night, I’m often met with anger, defiance, and resistance. Instead of having to fight with a child that’s incapable of learning due to sleep deprivation (like I’d have to do if the homebound teacher were still coming out), I can enforce a naptime.

Now, as you can imagine, to decree naptime in the presence of this particular ten year old boy is to ensure a different kind of fight, but it’s one that I can usually win and that actually results in a mutually beneficial end game. I may or may not “get school done” later in the day, but the rest of the day is sure to go more smoothly once everyone is at least minimally well-rested. And I’ve been pleased with the amount of non-traditional learning that’s taking place even when our planned learning does not.

For example, here’s a picture of something of the resources we were planning to use for school yeaterday:


Those resources cover history, art, spelling, writing, math, and visual literacy. Other subjects are covered on other days. Well, due to sleep deprivation, what we actually got done with that material is reading two pages of a history book during lunch. That’s it. Today’s school materials were not touched at all after that pitiful three hours of sleep. Napping was needed more than schoolwork, because survival.

But when I say learning happened anyway, I mean it. We saw Javan’s Weebo (gramdma) yesterday and while there he write this sweet love note for her and put it on her office desk:


That’s not a lot of writing, but it is writing! And it’s organic, meaningful writing, which is worth ten times the canned, forced stuff. He had to ask me how to spell “buddy,” so that counts as spelling for the day. And I’m sure there’s a self-guided good citizenship lesson here if you want to get all teachery-sounding.

While at Weebo’s, he also designed and built this double-crane race car:


What learning happened during the building process? Tons. Planning and implementation, creating structural soundness (he added the supports in-between the cranes after he realized they were a bit wobbly), problem solving, symmetry, work ethic (cleaning up after his building process), fine motor skills, and probably more I’m missing.

After Weebo’s, we had an extra half hour to blow before picking up Dad from work. Javan came up with the idea of bringing half-priced Sonic drinks to the techs at the airport fueling station who had let us in to see the super awesome jet last week. That’s economics as well as good citizenship  (giving, service). There were no planes fueling up when we arrived, but because they had no business, we got a free, unrushed tour of the aviation center and airplane hanger. We (mostly me) asked every question we could think of about the eight or nine different planes we saw. We learned that the wings double as fuel tanks! I had no idea.

Again, today’s lessons didn’t get done either. But this afternoon, Javan’s Grammy took him fishing at the park. They fed the ducks, Javan chased turtles, and he caught three fish including his first bass.


Afterward, he was filled with renewed curiosity and passion about deep sea creatures and deep sea fishing. When we got home, Javan watched half an hour of a National Geographic documentary about deep sea creatures while I cycled the laundry. When I asked him if the documentary was any good, he replied, “It’s awesome!” So he got an entire afternoon of unplanned hands-on and self-led science study.

We didn’t get to our scheduled work or our books. I didn’t check anything off of my teacher to-do list. I recogniz that those things are important and we will have more success with them at times when Javan is more stable. But I bet he learned more in these two days of embraced chaos than he would have from any lesson I had planned. It’s so good to be able to go with the flow again.

We have a psychiatrist appointment tomorrow afternoon to get help with sleeping, so wish us luck!

Dragon Heart Academy Grand Reopening and a Magical Moment

Tuesday was Javan’s last day of public school. We have chosen to withdraw him for several reasons. The tipping point that finalized the decision for us was when I was informed that Javan would be required to take the regular fifth grade state test this year and would not be permitted to take the far more appropriate alternate test for students with special needs. While he might be offered modifications, such as having the test read to him and answering verbally, that test would offer him nothing but an opportunity to fail, and that’s the last thing he needs. The disparity between the work that was being sent home for him because it’s actually on his level and the sample test material from the Texas Education Agency website is comical. I was told that because Javan’s IQ falls in the normal range, state legislature leaves no room for argument about which test he would take, and I was given no reason why he was allowed to take the alternate test last year though no laws have changed in the interum.

That frusration aside, the staff at the school were amazing throughout this entire past year while we experimented with different ways to educate and socialize Javan. But in the end we found that he is just not able to tolerate being at a school and homebound schooling was not a good fit for us. After all, if we can’t meet the goal of getting him in the classroom around other kids his age, a goal far more important than mere academics, what’s the point? It’s better for us to return to homeschooling, where I can fully tailor each area of learning for where he is at that exact moment.  I can take his current interests into account and build his work around those interests. I can modify school hours based on whether or not he slept last night. I can school in the afternoon if it’s going to be rainy so that we can enjoy the nice weather in the morning. The flexibility and individualization of homeschooling benefit us both. Thus, we happily reopen the doors of Dragon Heart Academy. To celebrate, I created a school logo for us:


We homeschooled Wednesday, Thursday, and Friday this week. We’ll be tweaking learning material and schedule daily for a while until we get it right for now. We do about an hour or an hour and an half of school each day and I make sure minimal writing is involved as Javan’s dysgraphia is his current cause of major school frustration. To offset his distaste for writing, he’s learning to type using Google Typing Club, which he’s actually very much enjoying. I require him to complete only one short level every other school day, but he enjoyed it so much that Wednesday he chose to complete four levels, repeating several of those levels multiple times.

Thursday, the beauty of homeschooling shone abundantly clear as Javan experienced a moment of pure magic. We were on our way home from park day and had stopped by Daddy’s work to bring him a surprise Sonic strawberry limeade. His office shares a parking lot with our little local airport and as we got out of the car to bring Dad his drink, we heard a loud jet and looked up to see it turning above us. One of Javan’s cartoon shows early this week mentioned something about a sonic boom, and he was curious to learn about that so we watched a few YouTube videos about sonic booms, the speed of sound, and the Doppler effect. He was so excited to have heard that loud jet, but we weren’t sure if what we’d heard was a sonic boom or not.

After delivering the drink, we decided to walk over to the airport and see what planes might be out back. We walked around the far side of the airport and lo and behold, there sat parked the very jet we’d just seen and heard! One of the techs fueling the jet noticed us standing outside the fence watching and he waved us to come in and get a closer look! We saw the fueling station with its huge, fat hose and the gas meter which had already climbed past 500 gallons. Javan got to meet the pilot, sure to be remembered as a True Hero of his childhood, and walk around and even touch the jet. And, no, he said what we’d heard was not in fact a sonic boom. The pilot offered to let him climb the ladder and check out the cockpit, but Javan inherited my unfortunate fear of heights to such a degree that I couldn’t pay him to climb that ladder. Literally. I offered him five bucks and received a hard “no” on the ladder climb.

Luckily, he was able to momentarily conquer his phobia of having his picture taken and shared, as I explained to him that this was a special once in a lifetime moment that he’d always treasure. He anxiously awaits having the following photo framed and hung on his bedroom wall:


Here’s a closer look at the joy on my precious boy’s face:


The whole walk back to the car he kept repeating, “This is the best day of my life!”

I know that homeschooling won’t always be magical. It won’t always be joyful. But it’s moments like this that make it worth it.

A Week in the Life

So now that we’ve made it to our metaphorical spring season, no longer in imminent danger of hospitalizations and ready to wake from our social hibernation, what does our daily life look like? A walkthrough of our week this week in particular may have you smacking your head alongside me at how every little thing can escalate to a near emergency when you have a child with extreme special needs, and you may also find yourself slapping your knee before we’re done.

Let’s see…Monday. I can barely remember that faraway day. So much has happened since then. We had an extremely rough start to our school week when Javan’s teacher came out for her alotted two hours that morning. I won’t go into the specific uglinesses that spewed from my child’s mouth, but I will say that it was enough that I wouldn’t even let him think about doing his schoolwork until he’d sincerely apologized, which of course took an inordinate amount of time.

Javan’s allowance is doled out based on his school performance. He can earn up to $2 each day his teacher comes out (twice a week) and $1 for each school day with me the other three days, making it possible to earn $7 a week. So when his teacher is here, he earns a quarter for each 15 minutes that he does his best work with his best attitude. When dad asks how school was today, we’ll often answer him with a money value,  i.e. “It was a $2 day!” Or “It was a $1 day.” Well, ya’ll, Monday was a 25 cent day. Twenty-five cents. Fifteen minutes of good work. Do you have any idea how agonizingly slow time passes when you are sitting at the kitchen table with a teacher, staring at your child’s untouched work for an hour and fourty-five minutes? Slooooooooowwwlyyyyy.

I’m pretty sure that was a day when Javan had slept only 5 hours the night before, an increasingly typical pattern. I can’t even remember if we got a nap that day, but at least my mom came to my rescue  that afternoon after receiving the following text from me: “Javan will have to lay down after lunch bc he had a bad school day. I’ll text you afterwards so you can come over if you want. (Please read as: Help! Save me!).” Moms are the best. We spent the evening dying each other’s hair, trying (and failing) to play games without glasses while the dye set, and watching West World while vegging on the couch after Javan went to bed.

Tuesday: another school day with the teacher. Here’s where my week gets a little too eventful. Approximately five minutes before her arrival time, my stomach decides to perform a lively rendition of its unique one act play, “Doomsday: The Bowel-ocalypse.” We live in a rural area. The teacher has a good drive to get here. I can’t in good conscience just say five minutes before she gets here, “Oh, can we possibly reschedule?” So I hang my head in shame as I text from my unadorned throne, “Well this is embarrassing. I’m kind of stuck in the bathroom. Can you please wait in your car until I wave you in.” Because it’s not like Javan can be trusted to just let her in and get to work nicely.

I finally wave her in, beet red and slightly sweaty, and attempt to get Javan to the table to work. 20 minutes later, as my son is in his room avoiding schoolwork, my stomach suddenly lurches to an internal microphone. “Now announcing, ‘Doomsday: The Bowel-ocalypse, A Survivor’s Tale.'” Apparently, the aforementioned play was in actuality not one act. This has just been a lengthy intermission and the entertainment will resume immediately. Did the lights just flicker?

I run to Javan’s room and tell him to just stay in there until Dad gets home, because, again, I can’t let him be alone with his teacher. Someone has to be there to control his behavior or at least provide a safety barrier if he loses control. Apologizing profusely, I run to my bathroom where I text my husband, “I’m sorry. Come home. My stomach is fixing to blow again.” Most romantic text ever. It’s a really, really good thing he works seven minutes away. And also a beautiful thing that naptime definitely happened that day, although I would have preferred that Javan not been up for the day at 2 a.m. in the first place.

Ah, Wednesday. A day that I will absolutely remember for as long as I live. The manchild finally made up for his past few impossibly early mornings by sleeping in until the blessed hour of 10 a.m. I decided that that called for us getting the car from my husband after lunch and going out on the town. I needed to shop for an outfit for an upcoming wedding. As a stay at home mom, my wardrobe is essentially bare of “nice” clothes. I own two dresses. One is too formal for most everything, and the other is my go-to dress for everything that requires a dress. There are two problems with said dress for the wedding though. One: I wore it to the bridal shower. And Two: I bought it many years ago and due to weight gain it’s now so uncomfortably tight in the Mountain Region that I need help getting out of it. I want to be able to sob openly at the wedding without busting any seams.

So we get the car for shopping and we drive it down to the Wally World to fill ‘er up with gas. I should have gone on to the next gas station when I saw how crowded this one was, but I’m a stickler for pinching my pennies and Wal-Mart gas is much cheaper in my area. Plus I wasn’t sure how long the fuel light had been on. I found a spot to fuel and realized why it was so crowded today. The credit card readers on all the pumps were down, so you had to go in to pay first. I never leave Javan in the car while I run in anywhere, but I’ve been consciously looking for small opportunities to let him exercise his independence and I’d parked at the pump right next to the gas station door, so I’d be able to see him and get to him quickly if he needed me. I locked the car, took my keys, and left him enjoying a sucker while I ran in. I paid for  $20 because I had no idea how much gas I’d need.

When I got back to the pump, Javan and I gave our thumbs up to say we were ok, and I began fueling. I put the handle latch on to automatically dispense the fuel until the $20 had been depleted. I guess the lady in the little red car parked behind me got impatient, so she backed up in a big U-shape around the gas station and to the pump on the other side. The person in the car that must have already been there began honking repeatedly and in response the lady in the red car rolled down her window and began shouting as she continued to back up. I’m incredibly concerned and distracted by this sideshow, but am pulled back to the moment when I hear the high pitched beeping of the machine saying it’s done fueling and the click of the automatic gas-makey lever on the handle shutting off.

I pull the nozzle out of my tank and much to my surprise and dismay it is still spraying gasoline full-force. All over the side of my SUV, all down the right side of my pants from the waste down and into both flip flops. I squeeze the handle to click off the lever and stand there holding the deactivated nozzle, senselessly repeating, “OH my God! What just happened?” The man at the pump in front of me kindly says, “I don’t know, but I saw it happen to someone else here just last week.” I look over at the pump, which says I’ve put $10.19 in my tank. I must have heard someone else’s pump that had finished, not my own.

Then I hear another man’s voice from somewhere to my left saying, “If that got on your feet you need to wash it off before it starts to burn you.” Burn me? Oh right, dangerous chemicals. I throw the nozzle back down in its slot, and scream, “HOW!?” The only thing I can think of to wash my feet with is the little squeegee thing for the windows, but I can’t find one. He helpfully says, “In the bathroom.” I kick off my flip flops in the parking lot and holler for Javan to get out of the car so we can find the bathroom. He can’t figure out how to get out of the car because I had locked it and taken out the keys. He just repeatedly pushes the unlock button and shouts, “It won’t open! I can’t! It won’t open!” I trudge back through the lake of gas on the driver’s side of the car and manually unlock the vehicle. He gets out.

We run through the tiny station to the other side, where the bathroom door is on the outside of the building, facing the pumps. At least it’s a large one-person bathroom, because I need to take Javan in there with me. He faces the wall as I peel off my soaked jeans and begin washing my legs in the sink. After I practically flood the bathroom, I look behind me and notice there’s a nice big water spigot with its own tiny foot tub and drain. I lather my pants up with hand soap and wash them in hot water from the spigot, wring them out, and put them back on. Oh, the burning! Why the burning? I find myself pantsless once again. It was apparent that I was going nowhere without help.

Once again, I call on my husband to save me. He had to borrow a car, go home and get me clothes, and return with them. We settle in for the long wait leaning against the bathroom walls as there is nowhere to sit. Just me in my panties and t-shirt and my 10 year old boy locked in a bathroom. Fun times.

When the fumes became overwhelming, I opened the door, which of course opened out, not in, so I couldn’t hide behind the door, and tossed my jeans out unto the parking lot. That helped significantly, but ten minutes later Javan began complaining of a headache. Ok, choices. I can keep him in the bathroom with the still-strong fumes burning through his brain cells or I can send him to the parking lot where there’s fresh air but I can’t be with him. I decided to let him leave the bathroom under the condition that he stay on the wall by the door. I cracked the door and checked on him every two minutes, which annoyed him to no end, but I gotta make sure he’s safe.

My knight in shining armor arrives with fresh clothes and a bag for the old ones, because we were still operating under the assumption that they, my favorite jeans and shirt, were salvageable. Turns out they weren’t, and after almost all of the bleach, vinegar, and detergent I have at my disposal, I’m not sure I haven’t ruined my washing machine as well. Also, I’m never fueling a vehicle again. Ever.

Thursday is homeschool park day. Our school for the day is being at the park and the expectations in order to earn his $1 for school are that he stay at least one hour and that he not be unkind. He doesn’t even have to be kind, per se. He can choose to ignore everyone and play by himself. He just can’t be unkind.

He spent most of his time sitting by the parking lot waiting for PawPaw to arrive and whisk us away to a lunch date and very little time actually riding his bike or playing. But still, he was in the sunshine tolerating other people. If tolerating others is the only social skills development we work on right now, still, there’s progress to be had there. Lunch with PawPaw went well as usual.

Afterwards, I thought we’d try dress shopping again. My husband had fueled the car, so that was not an obstacle. We went to Burlington, where I found several skirts and tops to try on as well as some lovely discount jewelry. As I browsed the clothes, Javan wandered the store, checking in at our meeting spot every few minutes. Usually, I insist he stay right with me, but he was in a good mood and, again, I saw an opportunity to let him practice his independence with relatively little risk.

Then I was ready to try things on in the dressing room. I showed him where I’d be, told him he could call to me if he needed me, and showed him where I’d meet him when I was done. It was the same meeting spot as before, very near the changing rooms. I tried on every combination of skirts and tops, which took quite some time and I was surprised he hadn’t called out to check on me for so long. When I finally did hear him ask, “Mom?,” I was on the last outfit. I told him I was nearly done and to hang tight for a minute.

When I opened the changing room door, I was rushed by a Javan-colored streak that charged into me with the full impact of his weight and summarily sobbed upon. “I looked in our meeting spot and you weren’t there and I ran all over every aisle looking for you until my feet felt swollen like watermelons and I couldn’t find you!” He wept for quite some time, despite my attempts to comfort him. We left without a dress. I’d borrow one from my mom.

Friday we had Javan’s pediatrician appointment that I’d made a few days before because he wouldn’t sleep, eat, or poop. I could have gotten him in earlier if we saw the nurse practitioner, but any changes like that are recipes for disaster so I waited until he could see the same doctor and nurse he always sees.

We had extra time after dropping Dad at work after lunch before the appointment, so we went to Wal-Mart so Javan could buy a toy with his $15 he’d saved up. When we walked in, I showed him the greeter and pointed out her vest and radio. We talked about how she was a person he could talk to if he ever needed help finding me. As we shopped, we practiced identifying workers as helpers. He bought a Transformers toy and we took off for the doctor.

Mind you, we’d been talking about and preparing him for this appointment since I’d made it days earlier, so I was dumbfounded when he asked, “Who’s watching me while you go to the doctor?” Child. No. I  calmly (I think) explained that it was in fact him that was going to the doctor. He did not respond well. I reiterated that there would be no needles or ouchy stuff. That’s how I can make him feel non-threatened enough that I can take him to the doctor by myself. If the doctor requests bloodwork or orders a shot, we would schedule another visit for that and Dad would need to accompany us.

We arrive at the office and the nurse gets his height and weight. He’s lost 20 pounds and gained an inch since we’d been there four months ago. The weight loss was due to taking him off much of his psychiatric medication and he is now at a healthy BMI. The nurse comments that his height is nearly off the chart at 5’1″. The nurse needs to “check his muscles” (blood pressure), but he refuses to get up on the examination table as long as “that toilet paper is on there” (the paper they always have on the tables to protect patients from germs). The nurse asks if she takes off the toilet paper will he get on the table, to which he agrees. He gives her the arm with the strongest muscles and his BP is fine.

The doctor comes in and attempts to strike up a conversation with Javan, but he completely ignores her. He very reluctantly lets her look in his ears and mouth and feel his tummy. She says there’s lots and lots of stool in there, but it’s not formed an impaction so we can just use a new laxative she gives us samples of.

She also needs a urine sample, something new and inconceivable for Javan. I get the cup and lid from the nurse and lead him into the bathroom. I’m all ready to proceed, but he looks at me like I’m crazy and asks, “Why are you in here?” I get kicked out as he assures me he can take care of this himself. Right. Independence. Got it.

I hear him lock the door after me and then an unthinkable sound comes from inside the bathroom…a stream hitting toilet water. “NO! JAVAN! PEE IN THE CUP, NOT THE TOILET! THE CUP!” I’m sure many giggles are being stifled throughout the office at my shouts. The sound stops and he says, “Oh, I almost forgot.” I just rest my head on the door and close my eyes as I hear him fill the cup. Then he burst out of the bathroom, running down the hallway toward the nurses station holding a full cup of urine. I’m horrified as he sets it down, dripping on the counter. The nurse, imperturbable, slips on some gloves and collects the sample. The urine checks out fine.

I am filled with gratitude and relief as I send my son off to spend the night with Grammy armed with a bag full of laxatives. Have I mentioned how moms are the best? The laxatives WORKED. I could see the difference in his stomach when I picked him up the next day after attending the wedding.

So far, the weekend has passed uneventfully. Javan’s appetite has increased some since surviving his own Bowel-ocalypse. And he slept nearly nine hours last night. Am I ready to do it all again as a new week starts tomorrow? No. But here we go anyway! I hope it’s a good week. For him, for us, for you. Let’s slay this week.

Spring Has Come Again

We made it through another fall and winter. We barely avoided a long-term hospital stay for our boy. By the skin of our teeth. But we’re here.

Fall was always my favorite season growing up. You leave behind the searing heat of a Texas summer and mosey on in to perfect temperatures and beautifully colored leaves that crunch deliciously under the soles of your shoes when they fall. And you don’t have to deal yet with the swampy, rainy season we jokingly call winter in the South or the spring that is sure to bring swarms of various flying, stinging creatures of ill omen as well as enough pollen to bury entire vehicles and ensure that all but a lucky few become seasonal mouth breathers.

But fall holds no joy for me now. Fall is the time of year that I know Javan’s mental health will be at its worst. It really starts earlier, about midway through July, and by mid-August we’re just gasping for enough air to survive another hour, another minute, another second. Fall is a time when school is impossible, even at home, property gets damaged, people get hurt, and isolation is the black hole that graciously saves us from dangerously colliding with outside forces at the very same time that it unrelentingly sucks the oxygen from our lungs and threatens to consume our very souls. Dramatic, yes. But also true, in the way that severe depression borne of isolation and fear is a truly soul-sucking experience.

And this time, ya’ll, this fall and winter, I couldn’t access enough light to write by. I fell into a darkness so deep that I no longer cared if the oxygen found its way to my lungs or not. There wasn’t enough air to form words, not enough light to give them shape. Just darkness. Emptiness. I was sure we were going to lose our boy.

It was very probably the “right” thing to do to put him in the state hospital for six months to two years or even longer, as we were urged to do by so many professionals. But when have I ever been given an easy “right” road when it comes to parenting? I live in a vast jungle wilderness. I can sometimes see a direction that will lead me to some important life-giving substance like food or water or away from some very dangerous predator, but there’s never a road to get to or from those things. Not even any tracks to follow. We always have to cut our own paths, through the thorns and past the venomous snakes. And we’ll never have enough time to cut both paths we might have taken at any given time to see which would have been the wiser.

I saw the professionals urgently pointing me in the direction they felt was right. I took the machete from their hands and prepared to cut the path. But I couldn’t go. As desperately as I and my family needed the sustenance on the other side of the thicket, I couldn’t go in the direction they pointed me. I knew the path I chose may be more dangerous, and that if I chose that path and harm came from my choice, there would be no one to blame but myself. They were urging me to cut the Head Path, the path of certainty, of assurance, of safety. But my heart wasn’t strong enough to do it, or maybe it was too strong; I’m not certain. But I ultimately did as I always do and probably always will do, for better or for worse, and chose to cut the Heart Path.

Maybe my son would have learned more in an institutional environment – more academics, social skills, independence, more Head Stuff – and maybe not. The one thing I know for sure is that the Stuff of his Heart would have been irrevocably wounded. My Javan has a most tender and fragile heart, and his heart is so beautifully and fatally intertwined with my own and that of my husband that the separation itself would have hindered its beating, and I fear that it may never have regained it’s once beautiful rhythm. I can’t see him so intimately broken like that. I pray that I never have to.

This is the terror that the fall and winter months hold for us. And it’s over for now. It may not “technically” be spring, but I got my first sunburn today *yes, in FEBRUARY* so I declare that Spring has come again.

A Very Important Postword: When I say that I think the path our family chose, the path of keeping our readily hospitalizable son home with us, was the right path for us, I am saying exactly that and ONLY that: It was right for OUR family, for OUR son. Just as each family and each child are different, so is each “right” choice. If you have made the heart-breaking and sacrificial choice to hospitalize your child, I stand with you in strength and solidarity and I loudly applaud your courage in making what was likely the most difficult decision of your life.

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