Black and White. And Gray.

Hey guys! Yes, we’re still alive and well here. I don’t even have a good excuse for not blogging lately…just haven’t been motivated to write. I’m going to challenge myself more in that area.

Things here have been GOOD! As most of you know, this time of year is generally filled with hospitals and heartbreak, but not so this year. Not even close. This summer has been one of great growth for our boy, physically, mentally, and emotionally. I’ll fill you in on details later, but for now I just wanted to write a quick post about two awesome conversations I had with Javan today.

So much of the time, people see labels as “boxes.” As neat little areas that define people. But people are so much more complex than that. Take people with autism for example. Folks often say things like, “Autistic people take everything literally” or “People with autism see only black and white, no gray areas.” But I think these two conversations, had on the very same day mind you, are a great example of how complex each person on the spectrum really is.

This afternoon, on the way to the grocery store, Javan and I heard a radio news story about a woman in our city who ran into a Whataburger to escape an alleged attacker. I normally switch stations when the news comes on because he is very sensitive, but they snuck this little story in quickly between songs. I looked over at Javan to see his response.  The conversation went like this:

Javan: Should we go investigate?

Me: No. there would be nothing to investigate. The woman ran into Whataburger last night to escape an attacker, but she isn’t there anymore. It would just be a regular Whataburger with nothing different than usual.

Javan: Not even, like, a big dent?

Me: *pauses in momentary confusion and then LIGHTBULB! Trying not to laugh. Failing a little*      No. She didn’t run into the Whataburger with her car. She was running with her feet and went inside the Whataburger because there were other people there and she wouldn’t be alone with an attacker.

Javan: Ohhhhh….thats much less exciting.

OK, so not only was that conversation hilarious and adorable, but it does in fact highlight a hallmark of autistic thinking: taking things very literally. But then tonight, as I was holding him while he fell asleep (read: holding him while he talked and talked. And talked.), he brings up one of the songs he likes on the radio. The song is “Shut up and Dance” by Walk the Moon and the lyrics go like this:

Oh don’t you dare look back
Just keep your eyes on me.
I said you’re holding back,
She said shut up and dance with me!
This woman is my destiny
She said oh oh oh
Shut up and dance with me

 
And Javan says, “You know, I was thinking about that song and when he says ‘You’re holding back,’ I think that could mean one of two things. One, she’s holding back her love for him. Or two, and I think this is more likely, he thinks she might be hiding something. Because she says ‘Just keep your eyes on me’ so maybe she’s trying to distract him from something.”

Wow. Have I mentioned this is coming from an 11 year old boy? He blows me away every day. How very different this is from the Whataburger conversation! He took nothing about the lyrics to this song literally. He didn’t think the woman was holding back as in physically holding her body back from the man. He knew it was metaphorical. As in, not literal. Not black and white. Gray.

No box could be big enough to fit him, or any other autistic person or any other person, period. Diagnoses and labels are informative and can help us understand ourselves and others better, but each and every person is a complex being. A complex thinker. A complex feeler. A beautiful, whole person full of beautiful mysteries and surprises.

Don’t focus on the label so much that you miss seeing the individual, because when you really see them, their complex beauty will bless you.

P.S. Probably the most awkward thing I’ve ever written in a blog, and I promise to delete it ASAP, but DAD, CALL ME! You left me a message with your new number and then I was all like, “Yeah, I’ll see that number in my missed calls and save it as Dad’s number. So I delete the message, right? But then is your number in my missed calls? Why no, of course not. Because technology. I’ve tried calling your mom but can’t get through. Then I had the bright idea of sharing my humiliating technology fail with the whole world so that maybe you’ll see it. I love you!

PPS: Click Here to see the music video for the song Javan talked about. Its kind of fabulous.

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My Biggest Fear

I recently shared this meme on my Facebook page just to see what goofy things my friends would come up with:

The answers: there were several Snake Women, Abandonment Person, Mediocre-Life Girl, Captain Everything, Fall Girl, Commitment Man, Spiderwoman, DyingDueToTreatableIllnessWithoutHealthInsurance Girl, Scorpion Lady, Blood Woman, Stifleshnookums (afraid of having her shnookums stifled, I suppose. I mean, aren’t we all?), Spiderbite (that’s me), and Car Wreck (who wins the awesomest catch phrase with “Car Wreck to the Wreckscew!). My friends are awesome.

But then I got to thinking about my actual deepest fear. I’m terrified of spiders obviously, but also heights, snakes, bugs, the usual stuff. But they aren’t my deepest fears. Not even close. In fact, I’d face every single one of my fears a thousand times over if it meant that my deepest fear would never come to be.

My deepest fear is a future in which my child is incarcerated, homeless, or worse due to his mental illness. A future in which he needs care and there is no one to care for him.

As awful as this fear is, it led me to an amazing encounter today. Today I met Mitchell. I’ve been passing Mitchell on the highway for years. He’s always pacing the same stretch of sidewalk. And he’s always, always engaged in animated conversation with… Himself? No one? He’s usually also counting on his fingers. I make a point to smile at him as I drive by and he always makes eye contact with me. In response, he sticks up another finger and counts one more. Is he counting smiles?

Today, Javan and I stopped for McDonald’s sweet tea before a doctor’s appointment. Mitchell was standing on the sidewalk out front talking away to some imaginary being. As we pulled out of the drive-thru, I pulled up next to him on the sidewalk and handed him the small amount of cash I had with me. He asked if we had anything cold to drink. I asked him if he could go inside to buy a drink. He told me he isn’t allowed on the property because he “broke some trees.” He gestures to a short row of crepe myrtle that look just fine to me.

The heat index is a whopping 102 degrees. I give him my sweet tea. He is reluctant to take it because he knows I bought it for myself, but he takes it with many thanks once I assure him that Javan and I could share. I’m thinking to myself how miserable and disgusting I am driving around with a busted AC. This guy must be fifty times as uncomfortable. All day every day. Before I drive off, I shake his hand and give him my name, wondering when he last experienced the basic civility of a human touch. He does the same. He’s so polite, genuinely sweet, and surprisingly intelligent.

I tell him I pass him all the time and if he needs anything to wave at me. It feels so lame and small. Of course he needs something. He needs everything. And there’s no one to help him.

As we drive away, Javan, who isn’t thrilled that he now has to share his favorite sweet tea, asks me why I did that. I said, “Because he needed it. Because he doesn’t deserve to be homeless. Because he’s mentally ill, his brain doesn’t work like other people’s, so he’s homeless and it isn’t fair.”

But inside I’m thinking. “How do we change this? How do we create a society where the sick are cared for, not punished for an illness they didnt ask for? How do I keep my sweet boy from becoming the next Mitchell?

And I don’t know.

I don’t know how.

But damn if I don’t want to find out.

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.

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.

Homebound Schooling

Is the world spinning faster these days? Yeah, I’m gonna need it to slow down now. Just  for a little while? Pretty please?

Today was Javan’s first day back at school since the hospitalization. It…DID NOT…go well. Three adults came to pick him up today: Mrs. Driver, someone new that I don’t know, and Mr. Assisstant Principal. I had gotten Javan to go willingly outside to wait for the bus, but because of a miscommunication they were running late and Javan freaked out and went back inside before the bus arrived. I couldn’t get him back outside, but I got him to the door and Mr. Assistant Principal helped me get him out onto the porch. Then he helped me peel him off the porch rail. Twice. Then we each took an arm and walked Javan to the car. He cried and screamed/shrieked “CALL THE POLICE!” over and over the whole time. Then we hoisted him into he car and I shut the doors and hoped for the best. I can’t even help buckle him or anything. Talk about feeling useless.

Twenty minutes later, I got a call from Mrs. Teacher that he was being sent back home after throwing up all over himself, the car, and poor Mr. Assistant Principal. He never even made it out of the car to go to school. Javan says he didn’t mean to make himself throw up, and didn’t mean to throw up on anyone else either. I kind of believe him, seeing as how he was perfectly honest about knocking off Mr. Assistant Principal’s glasses and trying to break his nose with a punch to the face. Although he did forget to mention that he’d also scratched the poor guy’s arms to shreds, so who knows. Javan also told me afterwards that he was trying to get to the front of the car the whole way to school so that he could take control of he vehicle and make the car take him home.

So they brought him home, I got him out of his throw up clothes, and I made him lay down for 30 minutes and he lost TV for the day. Standard protocol for a bad day at school. I also then had him do several of the worksheets that his teacher had sent to the hospital that he didn’t get done there. He was supposed to lose trick or treating tonight too, but I really hate to make him miss his favorite holiday. So because he did his work well for me and he called Mr. Assistant Principal and apologized for his earlier behavior, I did let him go trick or treating, which went spectacularly by the way. Several people commented on his politeness. No one commented on the fact that he didn’t go in costume.

So, back to the school thing. I got a call from the special education coordinator asking about setting up an ARD meeting to switch Javan to homebound schooling. It just isn’t even safe to try to get him to school anymore. For him or for anyone. I knew this was coming. I’m surprised they held out this long, really. Everyone up there has given their all plus some and I’m so grateful for each and every one of them. But, as Mrs. Principal and I agreed over the phone this afternoon, we’re just not being productive with school. So we agreed that homebound is kind of the only thing to do right now, even though that means giving up any socialization that was happening at school. We have a tentative ARD meeting set up for Thursday (three days from now),  if they can make that work with everyone’s schedules.

Javan will not return to school again. Not for now. I’ll homeschool him until they get a homebound teacher to come out and begin lessons with him. It’s been a long time once I’ve done lesson planning, but here’s a preview of what I put together for tomorrow:

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That’s a lesson from our Kindergarten Moving Beyond the Page curriculum combined with math and reading worksheets from Javan’s teacher. I want him to realize right away that staying home does not equal no school work. That should be enough work to easily last 2 hours, which is how long a homebound teacher would come out. Two hours twice a week. The rest of the week would be me having him complete assignments that the teacher leaves for him. He’ll still be considered a public school student, so he’ll still qualify for occupational and speech therapies through the school. It will all just take place at home.

Speaking of home, mine’s an embarrassing mess. I need to get rid of clutter so I don’t scare away the teacher. Is there a kind of garage sale where you just let people come into your house and ask if they can buy random stuff? Can you do that? This sounds like a good plan to me.

Oh, right, we’re talking about school. We’re definitely going to get involved in the TBRI (trust based relationship intervention) therapy as a family. The goal is to increase trust and decrease anxiety. Hopefully one day, Javan will be comfortable enough leaving me that he can be successful at school. Or maybe we’ll try the homebound schooling and it’ll be a perfect fit and we’ll stick with that. We’ll just have to try to and see.

Other than school aversion and extreme hyperactivity, he’s really doing fairly well considering he’s on no medications. He’s having some trouble getting to sleep at night and complains of being scared of monsters. We pray with him and reassured him that Rosco would ever let a monster close to him; he’d bark or growl at any stranger. We may try the CBD oil this weekend, but we really wanted to see him at home off of any meds for a week before we do that.

What else? Oh, he knocked out another baby tooth that was barely loose, even though we told him the tooth fairy wouldn’t pay him for teeth that had been forced out too soon. It’s like as soon as he notices that a tooth wiggles the least little bit, it’s gotta come out. Oy.

Javan learned to play Battleship this weekend and when he saw that you could sink each other’s submarines, exclaimed, “But submarines really already sunk!” I love his brain sometimes.

He had us do group therapy last night before bed. He lead the therapy just like his hospital therapist had done. He started by asking us to write down three things that make us angry and then he asked us write down four things that we can do to control our anger in those situations. He was very professional about it all. Here was my sheet from therapy:

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Then he asked us a bonus question about naming ways that bones help our bodies. Here’s what he told me to write down:

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He remembers the term “blood cell production” from therapy. That therapist does her job well.

That’s all the rememberings my brain can do today. So, anyway, here’s to our new homeschool-public school hybrid education!

 

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