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.

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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.

Hospital on the Horizon

It’s been a hard month, ya’ll. I haven’t blogged through it all because we got burned pretty bad by sharing details of our situation in an attempt to get help from a professional. So forgive me if I’m more vague in my sharing than normal. I’m angry. I’m more isolated than ever. And now it doesn’t even feel safe to ask for help. It doesn’t feel safe to trust anyone.

This month we have had two separate professional organizations recommend that we get Javan into the state hospital for about a six month stay. His behaviors have gotten so severe at times, and dealing with therapists and such can bring out his worst.

The first to recommend this course of action was the TBRI (trust based relationship intervention) therapist along with her supervisor. I had such high hopes that this therapy could help our family, but just like all the other therapies we’ve tried, they see Javan twice and determine that they can’t help him. These are the people who specialize in helping children with severe behavioral difficulties rooted in deep trauma, abuse, adoption, etc., but they can’t help my kid. That feels isolating.

The second people to recommend long-term hospitilization were with our local mental health authority, MHMR (mental health mental retardation), Community Healthcore. They had sent us to a psychologist to get IQ and adaptive behavior testing for Javan in hopes that if his scores were low enough, they could get us some services. I didn’t have much hope that the testing would work,but it was free to me so I tried it. Free doesn’t come around often.  Well, the testing went much worse than expected. Javan felt threatened by the psychologist from the moment he laid eyes on him. He was angry, destructive, violent, paranoid. The poor psychologist wasn’t able to ask Javan a single question. And Javan was so paranoid that he insisted I didn’t give that man any of our information either. He observed Javan for less than 15 minutes before graciously dismissing us. His report to Community Healthcore detailed the behaviors he saw while we were in his office, and based on that they recommended the long-term hospitalization. Oh, and they used the incomplete IQ and adaptive behavior testing from the school to determine that Javan doesn’t qualify for any services through them.

Did you hear me? Their conclusion, like everyone else’s, is that my son’s behaviors are too severe for him to function in the world, but they won’t help because he’s not low-functioning enough on the right scales. What the actual hell? None of this is right. None of this is ok. If you see a kid that needs help, you help them, dammit!

So I called his regular psychiatrist, Dr. Fulsom, the only blessed professional on the face of the planet who really won’t give up on us and an actual saint in my book, told him about some of Javan’s behaviors, told him about the recommendations, told him how much I don’t want to hospitalize my son, and he laid out my options for me as he saw them.

One, I call Dallas Children’s Hospital, who’s not in network with my insurance but I honestly don’t care about debt anymore, and try to get Javan into their two week intensive outpatient program. That option would entail Javan participating in an eight hour a day program while I receive parent training separately. We would hopefully get a room in the Ronald McDonald house, for free or very cheap, and it would have to be just the two of us since Dad would still have to be at work. Dr. Fulsom said if we try this and they determine Javan’s behaviors to be too severe for outpatient, which they almost certainly would, then they would place him in their inpatient program, which would be just like all the other 10 day hospital stays he’s already had. From there, Dallas Children’s could transfer him to the state hospital for a longer stay as needed.

Or two, we could put him straight into the state hospital when and I we decide to hospitalize. He said to tell them that Javan doesn’t respond to traditional medications. He told me that private long-term residential treatment programs would almost certainly reject Javan due to the severity of his behaviors, so the state hospital would be our only option for long-term treatment.

If I laid out Javan’s negative behaviors for you, the intermittent rage, violence, destructiveness, uncontrollable and very disturbing thoughts, making threats and then minutes later completely forgetting that he said those things, you’d say to get that kid in the hospital pronto. But his life isn’t just a stream of negative behaviors. In between all that, he wants to cuddle his Mommy and Daddy. He laughs until he can’t breathe watching My Little Pony or listening to me read Geronimo Stilton books. He plays on the floor happily with his Rescue Bots or Transformer  toys. He makes progress on important things like learning to punch his new punching bag when he’s angry instead of hurting others.

Who would cuddle him in the hospital? Who would make him laugh and relish in the sweet sound of it? Who would read him books or play toys with him on the floor? No one. He wouldn’t even have toys. No favorite soft blankets, no dogs to pet, nothing familiar. Nothing home. For months. Months of being safe and cared for, but not loved or treasured. How can I put a 10 year old through this trauma? How can I do this to my baby? He won’t understand. He’ll think he’s so bad that we don’t want him.

I mean, we do have a third option of keeping him home and going back to normal life after Christmas break, but we already know that won’t really work. We should have put him in the hospital multiple times in the weeks leading up to Christmas break, but we didn’t because we knew Dad would be home for over two weeks and school would be on break and we were just trying to get to this time. And it has been better having Daddy home and not having school. But not better enough for us to be under the illusion that Javan is well enough to handle life after the break. He needs help.

I’m so torn. I know he needs help. My mind knows. But in order to help his mind, I have to break his heart. I think I’m going to be sick.

Face Planting, Trap Setting, Melting Hearts and Taking Names

One month. No meds. That’s a miracle, ya’ll. Regardless of whether things are going perfectly (they’re not), that’s a huge freaking miracle.

I know he started Guanfacine, but because we started it due to a physical reason (motor tics), I’m not counting it as a psych med. I know  it can have anti-psychotic effects, but if a person taking it to lower blood pressure would not be said to be taking anti-psychotic meds, then I won’t say that about a person taking it for motor tics either.

And about those tics…I have an unlikely theory that they are being caused by the CBD. Every bit of research I’ve done, and I’ve done a lot, points to the conclusion that CBD should help with motor tics, not cause them. But looking back, it seems that Javan’s tics began within one week of starting CBD. So I feel like I need to look into it. Which is to say, I will be taking him off the CBD for an unspecified period of time to see if the tics get better or worse. If they get worse, I’ll know to put him back on the CBD straight away. If they get better, I can try decreasing his Guanfacine to see if we can take him off of that and have the tics stay gone. We had to double his Guanfacine last week because the tics were getting worse again, so if the tics get better while he’s off the CBD I can just decrease back to the starting dose and maybe then take him off of it altogether.

If his behavior gets out of hand while off the CBD, I honestly don’t know what I’ll do. I’ll have to decide whether to give him the CBD knowing that it could be causing his tics, or withhold the CBD knowing that it could keep him and us physically safe and keep him from being hospitalized. I guess it’ll depend on the severity of the behavior. These types of decisions never get old. (Just kidding. They totally do.)

He’s been doing ok since I last updated you. Just ok. No hospital behaviors or anything like that, but lots and lots of defiance and rudeness. Towards everyone – us, his teachers, therapists. Not all the time. Sometimes he does great. But the unpredictability is exhausting.

Last week, my mom and I took Javan on a field trip with our homeschool group to see Bill Blagg: The Science of Magic. I thought it was a really fun show, but Javan hated it and barely lasted the half hour I forced him to stay.

Just before the show started, he needed a bathroom break. To get back to the auditorium, we had to descend a slight ramp that ended with a wall in front and the auditorium doors to the right. Javan has always had difficulty walking downhill. It’s like he can’t put on the breaks, and gravity just speeds him up without his consent. Can you see where I’m going with this? The child face-planted into the wall at full force. Like one of those unfortunate hummingbirds in a Windex cimnercial. I ran down the ramp after him and picked him off the floor, inspecting him for damage and trying to quiet his cries. He’d hit his chin and knees pretty hard, but it didn’t bruise. This is a perfect example of dyspraxia, the extreme motor planning and coordination difficulties that often accompany autism.

Of course, Javan was ready to leave, but we hadn’t even seen the magician yet. I finally convinced him to go in and sit down. Well, the magician’s first tricks involved having the audience stare unblinkingly at a spinning wheel with black and white spirals on it. The kind bad guys use to hypnotize unsuspecting innocents on TV. So, Javan being his hyper-vigilant self got all kinds of perturbed and frantically insisted that none of us look at these wheel, lest we fall into the magician’s evil clutches. We didn’t look. But even after the wheel was safely tucked away, Javan never stopped complaining about the show’s lameness, so we left. And went to the zoo, which was blessedly empty of other visitors. The weather was perfect. We had a wonderful time. Day saved.

His hyper-vigilance lives on even at home. I discovered this week that black thread makes a startlingly efficient invisible trip wire. He set it up all through the kitchen, dining room, and living room, Entrapment style. He said we needed to increase security. I’m still finding black thread days later.

But his unlimited loving sweetness lives on as well. One of Javan’s favorite things about this time if year is getting Christmas toy catalogs in the mail and circling all the things he likes. Well, he presented me with this sweet gift that he’d spent the time to flip through page by page:

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It’s a Helzburg Diamonds catalog that he’s labeled “Moms Crismis Boock!” (Mom’s Christmas Book!)

Here are a few of the pages:

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He chose the tiara on the top left because I’m his princess. Do you hear that sound? That’s my heart melting. Then of course he circled the entire Pokemon jewelry collection and tons and tons of other collections. That boy. I love him to pieces.

Until next time, Friends.

Back on Medication, Sort Of

Three weeks with no medicine ! But that ended today at his psychiatrist appointment. Javan’s motor tics have become so severe that the doctor is legitimately worried that he’ll develop painful muscle spasms from the constant harsh movement. It’s mainly large and quick neck movememts, but has effected arms and hands as well. He prescribed Guanfacine (brand name: Tenex), which can help in two ways: one, it can greatly reduce or eliminate tics, and two, it can help him sleep better and/or longer. Increased sleep can in and of itself reduce tics.

If you’re like me, your first thought when I mentioned tics was, “Great, now he’s got Tourette’s too.” But Javan’s psychiatrist told us that this does NOT look like Tourette Syndrome because the criteria to meet that diagnosis include having both motor and vocal tics. Javan does not have vocal tics. The following article talks about Tourette’s, but I want to be very clear that at this point that’s not what Javan is being diagnosed with.

In this article on treating Tourette Syndrome, the Mayo Clinic says that “guanfacine (Tenex) — typically prescribed for high blood pressure — might help control behavioral symptoms such as impulse control problems and rage attacks. Side effects may include sleepiness.” So I guess this medication has the potential to help us in those ways as well. And I don’t see any serious side effects listed.

So, if it’s not Tourette’s, what is it? The doctor was also certain that this was NOT rebound dyskinesia, meaning the tics are not caused by taking Javan off of too much medication too fast. He said Javan has probably had an underlying tic disorder for some time that  was being covered up by the medications he was taking. He’s not diagnosing him with complex tic disorder, because the tics have to be present for one year to warrant diagnosis.

He did tell us that lots of kids get tics at some point and they can outgrow them in adolescence. We’re hoping for the best.

Progress Report

Guys, I really think things are going very well! I’m just trying to wrap my head around the fact that Javan has had zero psychiatric medications for nearly THREE WEEKS. And he’s getting better, not worse. Much of this has to do with him not going to school anymore. He’s been relieved of his primary source of anxiety.

His homebound teacher came out for the first time last week and he did really well with her. He liked her, used his manners, and completed all the work she brought for him with no problem. For the most part, he’s also doing school really well with me on the three days a week that the homebound teacher doesn’t come out. I still have all my homeschool curriculum right where I left it last year, so we just picked right back up where we left off with that. Here are a few pictures I took of some work he’s done with me:

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In the picture above, Javan drew a picture of something that made him feel happy, sad, scared, and surprised. Being with Rosco makes him happy. When Rosco whines, it makes him sad. When Mommy gets hurt, he feels scared (that’s a bandage on my arm). And he feels surprised when Rosco jumps on him without permission and barks. Javans character is saying, “Oh!” when he  gets surprised.

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This is a math page for which Javan created his own number line. I snapped that picture because for one he took the initiative to create his number line on his own, and for two only three out of ten numbers are written backwards.

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The unit we just completed from the homeschool curriculum was all about weather. Above is a picture of Javan’s favorite kind of weather: lightning. I found it very interesting that he chose that as his favorite weather because he’s actually quite fearful of storms, thunder, the power going out, and possible tornadoes. I also loved his creativity with the colors. I mean, if lightning looked like that to me, I’d love it too. But not only is his lightning creatively colorful, there is hidden meaning behind the aesthetics. Each differently colored lightning bolt has its own special power that corresponds with Pokemon powers…black is dark energy, green is grass energy, purple is poison, red is fire, blue is water, and pink is fairy. His mind is super fun.

We’re still dealing with some rages, but we’re talking one a day instead of constantly all day every day. And the rages end much more quickly and easily than they did before. Our homeschool group meets at a local park once a week and we have gone for years, but we hadn’t been for quite some time because Javan was in school. We don’t do school on park days, because socializing for Javan is more difficult than schoolwork, so I count socializing as his schoolwork for the day.

He fought going to the park this week. He got so angry over it that he bit me, but I wouldn’t back down, insisting that friends are important. He said, “I don’t have friends and I don’t want friends!” I told him that’s ok. I even told him that he didn’t have to talk to or acknowledge anyone there, but he had to go.

He did awesome at the park. We stayed for two and a half hours. I was able to stay in the “mom circle” while he rode his bike around and around the huge path circling the park. He probably rode at least a mile that day. And I counted ten positive interactions with others, three of which were with other children. That’s just what I counted , but I’m sure he had even more positive interactions when I wasn’t looking. And zero negative interactions. Zero.

I had told him before we got there that if anyone upset or confused him, he was to come talk to me about it before confronting them. And he did! He got upset once when we were there and came telling me that a bigger boy on a skateboard tried to run into him on purpose. I told him I really didn’t think it was on purpose and that if it happened again to come tell me, but otherwise not to worry about it. He accepted my advice and there were no problems!

Then we got home and things got pretty rough. He’d successfully navigated the social anxiety of park day, but often after doing something difficult like that he’ll come home to his “safe place” and lose it because he reached his limit and needs to let off steam where it’s safe to do so. He wanted to do something that I wouldn’t let him do immediately, which lead to him yelling, throwing things, and getting destructive. It also lead to me yelling and getting in his face. We were both at our limits. So, we went and picked Dad up from work and then I took an impromptu night out.

I’m having a difficult time adjusting to having Javan home 24/7, especially because he is only sleeping an average of 8 hours a night and not taking naps. That basically means that I get absolutely no time to myself. Because I have to sleep when he sleeps. So there’s no time left over for me to watch Netflix in the evenings, spend time with my husband, get time alone (which, being an introvert, is something I need to survive), make phone calls, shower, etc. And there’s an energy deficit that I’m not sure how to deal with. Transitions are hard, but I’ll get the hang of it.

The one issue that’s really causing me concern right now is that Javan has developed a tic over the past week. At first, I wasn’t sure I was really seeing it, but it’s increased enough over the past two days that now I’m sure. It’s a neck tic I guess, where he turns and tilts his head to the left in a certain pattern and sometimes scrunches the right side of his face.

I called his psychiatrist about it and he said this has one of two causes. One, he could have had an underlying tic disorder that’s been covered up over the years by the medications he’s been on. Or two, and I think more likely, it’s a rebound tic from coming off all the meds, and hopefully temporary. He said to give him Benadryl, which has been helping a ton, and if the tic isn’t gone by Monday he’ll stay late after office hours to see Javan. Is this doc awesome or what?

And now we prepare for a new and very busy week, which will include two visits from the homebound teacher, three homeschool days, one intake visit from the TBRI therapist along with the school behavioral therapist, two trips to Tyler, one homeschool field trip, and one blessed Friday when Dad only works half a day. Wish us luck!

We Have Hope

These days Javan is super hyper in every way. His brain is going 1,000 miles an hour and he never stops talking. He’s generally happy and laughing a ton, super high energy, and sleeping way less. It’s obvious that he’s manic, but less dangerously manic that I’d expect him to be while medication-free, especially in the fall.

On average he’s having no more than one aggressive rage a day. Those have been scary and unpleasant and hope-draining at times, but I do believe the CBD oil is helping. Now it’s just a matter of playing with the timing and dosages until we find what works best for him. Right now, we’re up to 50 mg a day; 20 mg in the morning, 20 mg in the afternoon, and 10 mg before bed. That’s an extremely low dose, but I want to start very slow and not give him more than he needs, mostly due to price since you can’t overdose on it.

Saturday afternoon, we saw what we think was the CBD working to stop a rage in its tracks, although we won’t be able to say that with certainty until we’ve observed him on the oil longer. Because he’s never taken meds in the afternoon and the routine isn’t habit yet, I forgot to give him his afternoon dose. About half an hour after I should have given it to him, he began raging because we wouldn’t let him leave the house in shoes that had obviously been peed in and needed to be washed.

As the episode began, I remembered the CBD oil and was able to get him to take it. The rage then escalated into a full blown hostile situation that had us wondering if he was going to need to be hospitalized again. He was getting violent. We were able to get him to go to his room where we asked him to try to calm down. He started yell-singing “I don’t know what I’ve been told!” military style and alternating between,”I don’t know what I’ve been told. Now I’m gonna kick this door/wall” *BANG!”, and “I don’t know what I’ve been told, now I’m gonna punch myself in the face!” *THWAP!

We went in and intervened because he’s already got enough holes in his walls and we didn’t want him getting hurt. He raged on in his growliest monster voice that he wanted us to get out, and he raised fists and even swung, but didn’t strike. He continued his military cadence and  wall-kicking, while berating us in between for not letting him wear the shoes. His rage was so severe that I began discreetly recording it on my phone as evidence to show the hospital staff if we needed to bring him in. Then it just…changed. So suddenly and severely that even with all the strange behaviors we’ve seen over the years, my husband and I were giving each other that look that silently says, “What the heck just happened?”

Javan was still talking in his monster voice, but he switched from yelling threats and insults to telling me conversationally about someone named Princess G that used to be his great friend until she left when he was six. Through gentle questions, I was able to infer that Princess G was actually a Pokemon character. I offered to watch “her episode” with him if he’d take off the shoes so they could be washed. He growled, “It’s a deal.” and immediately took off the shoes.

The rage was just…over. Just like that. it just sort of dissolved. During my research on CBD, I read several times that many people start feeling calming results about 10 minutes after they take it. That seems to be what we observed. Like I said, we won’t know for sure until we have had longer to observe him on the CBD over time and in different situations. It could have been a fluke. But the fact that both my husband and I were completely dumbfounded by what we’d just witnessed after as many rages as we’ve experienced tells me that something’s different. I hope we’ve found a solution.

He’s still got a ways to go, but this is the first time in a long time that I feel like we might be headed in the right direction. I’m curious to see what his psychiatrist thinks at his regular visit tomorrow. I’ll tell him the good and bad of course.

I’ll tell him that we aren’t sure Javan can sustain being off of medications, but see what his opinion is on us continuing to try.

I’ll tell him about the rages and the dangerous threats he’s made to himself and to us, like the day he threatened to stab me or himself in the eyeball with a pencil to avoid doing a reading page at school time. After calming down, he said he really would gave gone through with stabbing his own eye.

I’ll tell him about the weird things, like filling all of Mom and Dad’s shoes with water and washing his hair with mouthwash in between showers to keep it smelling fresh.

I’ll tell him that Javan is still struggling with separation anxiety, especially from Mom, and that he’s being hypervigilent about protecting his home and family from bad guys.

I’ll tell him that Javan is spending a lot of time in is imaginary world, interacting too much other his imaginary friends, to the detriment of his interacting appropriately with reality at times.

I’ll tell him hat hypersexuality has returned with the vengeance that only early puberty miced with mania can bring.

I’ll tell him Javan’s sleeping and eating much less than normal, yet has boundless energy.

But I’ll also tell him that homebound schooling is going well for us. That for the most part Javan has been compliant with schoolwork.

I’ll tell him that Javan has responded very well to having therapists and a new teacher enter our home. That he worked with them to he best of his abilities and treated them respectfully. He did so well with his new teacher today that she’s going to do 4 hours a week with him instead of 2.

I’ll tell him that we’re starting TBRI (Trust Based Relationship Intervention) therapy next week and that I think it’s going to help ease his anxieties.

I’ll tell him that I think the CBD can help Javan.

I’ll tell him that we have hope.

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