Hospitalization #8, Days 1-3

We finally had to do it. We placed Javan in possible residential treatment at Terrell state hospital. I say possible because, while his regular psychiatrist recommended 1-3 months of treatment, it will ultimately boil down to what the hospital psychiatrist thinks is best and what the insurance is willing to cover.

Side note for parents considering Terrell: If you’ve been told you have to sign custody of your child over to the state for the duration of their stay, guaranteeing that they get on Medicare and you pay nothing, that is false. It may have been true at one time, but it is no longer. We were not asked to sign over custody. And we will have to pay expensive out of network fees with our insurance.

I know many of you assumed he was doing well since I haven’t blogged in so long, but really I just haven’t blogged because as he’s gotten older he’s also gotten more private and I wanted to respect his wishes for privacy. However, during hospitalization, blogging is the easiest and most effective way for me to communicate his progress and wellbeing to the masses that care about him.

We placed him in Terrell Wednesday afternoon, after a visit to his regular psychiatrist prompting us to do so. He had already urged us to take this action nearly two weeks prior, but I needed time to investigate options and come to terms with this reality.

The drive to the hospital was really hard. It was so difficult to get him there safely that at one point I dialed non-emergency police because we needed them to take him for us. Knowing that was happening, Javan was able to calm down enough to be safe with us for the rest of the trip. Dad had to drive, even though he’s suffered from an intractable migraine for the past four months that is so severe he hasn’t even been able to work. I sat in the back seat and held my boy. It’s what he needed and probably what I needed too.

Once there, Javan’s fear became so overwhelming that after the admitting psychiatrist interviewed me, he didn’t even bother with the usual interview with Javan. No need upsetting him further when he was obviously going to be admitted. His regular psychiatrist had told us it is very unusual to be able to just walk in and be admitted. You usually have to be put on the waiting list. But if it is seen as an emergency safety issue, it is illegal for them to turn us away. So we went knowing we might be turned away, but we were fairly sure they would have to accept him and they did.

We were then shuttled to the unit where he would be staying. The nurses were explaining rules to us and having me fill out paperwork WHILE Javan was clinging to me begging me not to sign, and feeling more betrayed with every paper I did sign. At one point, she was explaining to me that during short visits I could bring him special outside food, but only as much as he could eat during the visit as he couldn’t bring it back to the unit with him. She said, “So don’t bring like a dozen cupcakes, because he can’t finish that during your visit.” He pipes up in the middle of his meltdown, “HAVE YOU MET ME!?” Y’all. He wants that dozen cupcakes. That child.

She also called me later that evening, afraid that my son had TB, because when she’d tried to do the TB test, he said no he has to get the chest xrays instead. She said, kids don’t usually know chest xrays are the next step in diagnosing TB so she thought he might really have it! I was like, naw girl he just ain’t want you sticking him with that needle. She got a kick out of his trickery. I have absolutely no idea how he knows anything about TB.

We can call him every day at specific times. We called Thursday evening but all he could do was cry and beg to come home. He was so inconsolable that all I could do after a while was tell him I love him and hang up. I called the nurse’s station after that to ask some questions and I could hear him vomiting in the background because he’d worked himself up so much. She told me he hadn’t been eating.

So when we visited the next day, Friday, we bought him his very favorite food, an Arby’s chicken slider, apple turner, and a chocolate shake. Yes I know I spoil him. He didn’t eat it. He ate maybe two tiny bites of the slider, drank half the shake, and didn’t touch the turnover. They brought him dinner from the unit and he didn’t even look at it. His tummy hurt and he felt nauseous. He’s homesick, literally.

I will continue to call him every day, even though I know it will be more of the same. I know he feels abandoned there and I want him to know I think about him every minute of every day and I love him more than should be possible.

I really, really, hope that good will come of those for him and not just trauma.

End note: I’ve started making art and the morning after we left him there I made this art because I had feelings that needed a place to go.

My son has the most beautiful eyes on the planet. When he cries that much, something happens to them. It’s like they actually glow they’re so bright. I couldn’t help but notice their exquisite beauty during that time of intense suffering. My art falls extremely short of capturing the beauty of those eyes. I show him drowning in his tears, drowning in his sorrow. Reaching out for me to save him and watching me being whisked away from him by a dangerous stormy wind. I am reaching back, nearly falling out of the basket myself, knowing that I can’t rescue him. I want so bad to rescue him that it physically hurts. My only choice is to abandon him to the stormy seas, knowing he might drown. But it’s the only real chance I have to save him.

If you’d like to see more of my art, please like KristaBee Creations on Facebook.

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I’ve Got a New Favorite Number

Have I really left you guys hanging for six months. Man, time flies when you’re having fun. At least I left you on a high note, right?

And time has, surprisingly, held that high note through all these months. Things have been going spectacularly. Javan went manic, like he does every fall, though it waited close to winter to peak this time. It waited so long to show up that we really wondered if it wouldn’t come at all this year. He’s still manic now. But it’s been nothing like the last two years, where he was in and out of the hospital and no one knew how to help him.

In fact, as hard as mania is with it’s periods of sleeplessness, obsessions, speeding thoughts, and hyperactivity, in retrospect I’m glad it did come this year. Because if it hadn’t, I wouldn’t have been able to see my son fight through it like the fierce warrior he is. Javan has handled his rages, when they’ve come rushing to the surface, with zero instances if aggression or major destruction. Rages don’t happen often at all these days, but when they have, I’ve seen his pupils dilate, face get red, whole body tense…and him keep his hands balled at his side, controlling himself through all that anger. I’ve seen him choose to separate himself from others rather than hurt them. Scream at his bed and throw his pillows instead of throwing books through the walls. Self-control in the face of anger is hard for grown people with no mental illness. To see my 11 year old boy with all his added struggles achieve the levels of self-control he’s headed for fills this mother’s heart with indescribable pride.

But, like I said, rages rarely happen these days. What’s more pervasive in day to day life is the constant planning and obsessing over unrealistic goals. For instance, we went to a friend’s house for dinner. Side note: They have a five year old girl that he played wonderfully with! Yay! Anyway, there was a fishing show on TV there that he got interested in. For weeks afterwards, Javan watched countless fishing shows, even documentaries, at home, and made pages-long lists of the best fishing sites in the world and the most profitable fish to catch and sell. Wonderful organic learning happened. But he fully believed that our family was going to immediately prepare for a trip to the Nile to catch some rare fish or another, bring the fish home, and sell them at a fish stand. Cute, right? Tell me that after he’s begged you in earnest for the thousandth time to get the plane tickets. And after your living room becomes a cardboard box boneyard and you’re tripping over cardboard box fish stands trying to get to the laundry couch. What, I have a laundry couch OK? Laundry chairs are for amateurs.

And the hyperactivity, whooo, the hyperactivity. Boy, that is something else. I think we’re coming down from the top of that coaster. We went from hardly being able to get Javan off the couch to not being able to get him to sit down at all. It can get pretty intense. But I’ll take it over worrying he’s going to develop couch sores and blood clots any day. He’s grown taller but hasn’t gained any weight, probably due to activity. He’s actually starting to look a little athletic.

Combining the obsession and hyperactivity can produce some interesting results. For example, over the colder months, he’s developed a passion for fire. Exciting! *pastes on a happy smile* Everywhere we go, ignoring my protests, he collects fire wood. Even though we have a quarter rack of fire wood in our carport. When we visited his Uncle Noah’s house, he indulged Javan by lighting the huge fire pit in his back yard. Javan grabbed a bucket and worked for hours, seriously like 4-5 hours, running around the woods collecting sticks, branches, leaves, pinecones, anything flammable, and dumping it all on the fire. I’m pretty sure at one point he dragged a small tree over. He was red faced and sweaty and stinky and determined. And happy. We gotta do that again soon. He spent a full hour at homeschool park day one week stuffing our SUV with tree branches from the surrounding woods. I’ll probably never get all the leaves out of our car. By the time he was finished, there was hardly room for us to get in! I spent the entire drive home with a branch stabbing me in the arm. He’s spent hours collecting leaves at his grandparents’ house and hauling them back to the burn pile and his great grandpa guided him in starting his very first fire. Obsessions aren’t necessarily a bad thing. They’re just super intense.

Socially, he’s making huge strides. I mentioned earlier that he played well with my friends’ five year old daughter. We didn’t expect that to go so well. We went over armed with tablet and headphones in case it didn’t. He wasn’t sure at first and just observed from the sidelines for a while, and then he came over to her and introduced himself sweetly and that was that. On Christmas Eve, we went to a family gathering which included Javan’s adorable baby cousin, Lillian, who’s four years old. If y’all have been with us a while, you know that Javan has a fear of babies and baby germs…and he generally considers those five and under to be babies. No one knew what to expect. We knew we may only be able to make an appearance and then skedaddle. He did the same sideline observer routine, and then went over and asked Lillian if she wanted to play Beyblades with him. The brand new ones he’d just gotten for Christmas. He patiently taught her how to play and didn’t even freak out when she accidentally shot her Beyblade into her mashed potatoes. He just calmly wiped it off and gave it back to her like it was no big deal. Y’all. I just. The adults around the table just gave each other these wide eyed “what’s happening” looks. Javan and Lilly were inseparable for the rest of the evening. The only thing he didn’t want any part of was playing with her realistic baby dolls that really pee. Understandable. He was so excited when his cousin Addison, five years old, came to our place to celebrate Christmas. He pulled out toys for her to play with, jumped on the trampoline with her (and Uncle CJ), and romped around the house with her being silly and having a blast. He even let her ride him like a horse! He can’t wait to see her again. He’s expressed several times to me over the past months that he really thinks he’s getting over his fear of babies!

And it’s not only “babies” that he’s socializing better with, but kids his own age too, and that’s always been the most challenging group for him. At park day last time we went, he ran around with the same two boys, aged nine and ten I think, for nearly an hour. They mostly just walked around and talked, I have no idea about what, but it was beautiful to see. The Age of Play Dates may finally have arrived for us.

Ok, what else is there? We’ve talked about mental, physical, social, emotional…ah yes, academics. He is doing amazing. About two months ago he started complaining that the Level 2 Math we were doing (second grade, but we don’t say it that way because levels is truer for us) was “baby math.” So I put him on Level 3 math (we use an online curriculum that makes switching grade levels a breeze), and not only has he excelled at it, he actually enjoys it more! He’s on Level 1 Language Arts, but after last night, I’m ready to bump him to Level 2 and see what happens. What happened last night, you ask?

Last night, my son read for enjoyment for the first time. As an avid lifelong book lover, I’ve striven yo give my son a love of books. And he has always loved being read to, but getting him to read himself has been a Huge Struggleâ„¢. Javan and his Dad went to Half Price Books the other night and came home with Star Wars books galore, some of which were leveled readers. So yesterday afternoon, I told Javan one of his school jobs was to read one to me. He not only didn’t complain, but he actually far surpassed my expectations on how well he did reading it. I only had to help with a few words. Then, get this y’all, then last night while watching the Olympics, Javan asks if he can show Dad his new skills. I’m like, um yeah OK, expecting some sort of forthcoming light saber demonstration, when he pulls out the reader, sits in Dad’s lap, and reads him the whole book again. He wanted to show Dad his reading skills. Then he gets his stack of older easier readers, sits in my lap and reads me THREE in a row! Because he wanted to! Yasssss!!!! Here are the books he read, because I want to remember this forever:

And yes, that is a Christmas blanket I’m covering my legs with, because it’s so stinking soft I think I’ll keep it out year round. (Thanks Micah!)

School usually goes without a fight these days, though Javan does have a special way of adding some extra spice every now and then (OK, often). The time I asked him to write the date, for example:

Translation: Thursday January the 11th, 2018. Thank you for writing this even though I ordered you to do it. By, Javan.

I didn’t complain about the extra writing practice.

All in all, I just wanted you guys to know how great he’s doing. It’s gonna be OK. We’re gonna be OK. This year has been wonderful, and 11 is my new favorite number.

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.

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

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.

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