Hospitalization #8, Days 21-25

Halloween has come and gone. The hospital put on a big fall fest for the kids a few days before Halloween. They got to wear Halloween themed shirts, play fun carnival games, win candy, and decorate pumpkins. Javan was so very excited and proud to show us his pumpkin and tell us that it won first place in all the pumpkins in the whole hospital! They also did a costume contest and he won scariest costume…he did not wear a costume. He thinks this is very entertaining.

Javan’s Award-Winning Pumpkin

The night he found out that they would also get to dress up and go trick or treating on Halloween, he was so excited telling us over the phone that a nurse came in telling him not to yell at his parents. However, we were disheartened to hear his devastation when he informed us that he lost the privilege of trick or treating due to rule breaking. He had been asked several times not to bring or sneak books or any other personal items into school with him. That day he actually wore two pair of pants, because they check the students’ pockets, and hid an activity page from a coloring book in his inner pants pocket. The social worker seemed impressed by his ingenuity. It would have made more sense to me to take away the privilege of having personal items in his room for a time, but I have to let them do discipline their way.

His favorite hospital activity so far seems to be playing DND on evenings when the cool nurse works. They play games during group time too and he’s told me they play Family Feud and a game where you have to make up a story about yourself and the others guess if it’s the truth or a lie. We think his social skill muscles are getting stronger through these activities. They watch lots of movies too. He was especially pleased when they watched “Black Panther,” because we don’t let him watch much PG-13 yet so we’d said no for months to his begging to see it.

We know he also really enjoyed the movie “The Day After Tomorrow,” because he described the entire plot down to minute details during our visit yesterday. The child hardly paused to take a breath.

Yesterday was our first off grounds visit, meaning we could go anywhere and do anything as long as we were back in four hours. The first thing he did was present us with this beautiful card he’d made. He put thought into every detail.

The front has puppies and kitties on it. The top dog represents Dad because he thinks Dad had a dog like that growing up. The pug also represents Dad because he wants to own a pug someday. The retrievers represent Mom because I grew up with a retriever named Merlin. And the kitty represents me too because it’s cute like me.

The note reads: “Dear Mom and Dad, I miss you and love you. I hope you are doing ok. I know we’ll be together soon. Hugs and kisses. Love, Javan”

Every sticker has a meaning. I hope I remember them all correctly. The heart means “I love you.” The frog means “you leap over my heart.” The sun means “our love will never stop burning.” The star means “you’re the light of my day.” The flower means “my love blooms for you.” And the butterfly means “our love soars.” It’s the sweetest card I’ve ever been given and I’m framing it and keeping it forever. If my son ever decides to marry, and he adamantly despises that idea, but if he does I know he’s got the romance part down pat.

Even the back is not without meaning. The stickers on the left represent Mom. The middle stickers represent strength, and the right hand stickers represent Dad. The Ant-Man sticker symbolizes Dad growing up from infancy to adulthood.

We then had four hours to do whatever we wanted. We did a Google search and found this tiny petting zoo nearby called “Gentle Zoo.” It was perfect. Small and uncrowded with beautiful weather. He fed the goats, pigs, and a llama. The white pig was by far his favorite of all the animals to feed. He got to play in a giant inflatable hamster wheel in a shallow pool of water. That wore him out but he loved throwing his body around in it, getting that deep pressure from crashing that his body craves. They also had this giant jumping pillow, sort of similar to a bouncy house but way cooler and bouncier. He and I bounced together for quite a long time, pausing when we got winded to just lay there and look up at the sky together. We left just in time to grab a quick bite at Wendy’s and head back to the hospital. He had a difficult time letting go and still didn’t go willingly, but it wasn’t nearly as dramatic as last week’s parting. We’ve learned that it’s easier if Mom and Dad don’t go into the building with him at all and the nurses just pick him up at the door.

We were afforded two four hour visits this week, and rather than drive back and forth, we decided to stay the night at the hospital family center and do our visiting days back to back. The family center is set up like a free hotel for families that have to travel. The beds were teeny tiny, rock hard, and set up “I Love Lucy” style, but we were grateful to save some money. When we first entered our room, I had a mini internal panic attack thinking about how scared Javan must be to be shown a room like this and then left there alone for weeks with no family and nothing familiar. The sheets, pillowcases, and what must have been considered blankets were all stamped with a huge red “State of Texas” label, which just screamed to me “you are in an institution and none of this is yours, and don’t forget it!” Not very homey feeling to say the least. Again, I want to reiterate that I’m not complaining, I’m very grateful to have been able to stay there. I’m only bringing those thoughts forward as they helped me understand how my son must feel.

For today’s visit, he asked if Grammy (my mom) could come along. She drove over this morning to spend the day with us. Javan wanted pizza, so I looked up a random pizza place nearby and we gave it a shot. If you ever get a chance, stop by “Samee’s Pizza Getti” in Rockwall. It was amazing. Small restaurant setting, delicious pizza absolutely loaded with toppings, and great prices.

From there we headed to Urban Air, an indoor trampoline park with a ninja warrior course. He jumped on the crash pad, did all four warrior courses, shot hoops, and played dodgeball. I bet he’ll sleep well tonight!

When it was time to return to the hospital, he got sad again and cuddled mom in the back seat, but did not cry. He didn’t exactly go into the hospital willingly, he had to be pried off of me and pried off the door, but the fact that a single nurse was able to get him in by herself means he wasn’t fighting too hard.

He sounded great when we spoke to him the phone less than two hours later and he was gearing up for a game of DND with his friends. And hopefully doing laundry. The kids do their own laundry there. Javan’s clothes for both visits were dirty and had food stains. He said he put some clothes in the wash a few days ago, but keeps forgetting to dry them. I don’t know if the staff aren’t paying attention or if they think he’s being willful, but I wish they would realize that he needs more reminders than the other boys because he’s developmentally delayed. I would think they’d talk to a kid in obviously dirty clothes about doing his laundry.

The doctor has made no changes to his medication, even though we still think it’s making him more irritable. Maybe it’s a case of waiting to see if that tamps down over time. The social worker said Javan should be released within 1-4 weeks, depending on behavior and if they have to change his medication. So we know we are likely at least halfway through this stay. I hate coming home without him. I’m ready to bring him home.

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Hospitalization #8, Days 13-20

We got to visit Javan for a four hour on grounds visit Saturday. On grounds means we could leave his building and go anywhere on hospital grounds. It’s a really large place, so we walked around quite a bit.

He started by proudly showing us his school, which he’s really enjoying. He stopped along the way to show us the bush with pretty red leaves that he picked to give his teachers one day. All the buildings were closed, so we couldn’t go inside his school, but he insisted we walk right up to the glass doors and peer in like stalkers to see every detail we could spot. I asked him what he loved about this school and how we could make our homeschool better based off of that. He said we should do three quarters computer school and one quarter paper school. That really surprised me as he usually avoids paperwork like a vampire avoids sunlight. I plan to ask the principal to send some of his work with him this week so I can see what it is that makes their paperwork so much more survivable. I asked if we should do school for four hours because I think that’s what they do there and he said “Let’s don’t get carried away. How about two.” I think I can work with that.

Next he showed us the clinic where he goes for checkups and where he went earlier this week to investigate some chest pains. The doctor said it was probably a one time thing and no big deal. Again, closed building, stalkers squinting through the glass, the whole nine yards. It was not enough to just look at the building.

The whole visit, he lead us around with an unexpected exuberance and pride, as if he felt that this place belonged to him. Like he was giving us a tour of his grand new home. His favorite feature of the hospital seems to be the shuttles. He’s absolutely fascinated with them. They’re 10 person white vans that drive around giving rides since the place is so big. We only saw one driver, and we took his shuttle twice because we had to know what it felt like to ride in the first row and the third row. He likes the third row best. The second row was just two bucket seats and he seemed not to care about those at all. That’s probably good because three shuttle rides might have been awkward.

We wanted to play frisbee golf, as they have the baskets there, but we didn’t have any frisbees, so we used this little nerf football I brought and we played a few holes of football golf. We also brought a basketball and shot a few hoops, but mostly we just bounced the ball to each other. He showed us around outside until the mosquitos attacked en force, then we decided it was time to high tail it back to the unit. He showed us some of the letters and cards he’s received from sweet friends. Getting mail makes him happy and he keeps every piece.

We noticed on our visit, and we’d noticed for several days during our phone calls, that he seems much more irritable and emotional than normal. I think that’s due to the Lexapro and I emailed his social worker about it. He’s gotten in trouble twice this week for minor infractions involving the boys on his unit. He didn’t get in trouble once before starting the meds. But it is hard to tell if that’s the med change or just that he’s getting more comfortable there.

The visit went very well until the last ten minutes, when he realized it was time to part. I asked what we could do to make this part easier for him. When he said “just hold me” my heart about gave out. I held him on a small couch, where he sobbed loudly for the entire duration of our stay. I kissed his head and stroked his arm and back telling him he would be OK this is only temporary, but I doubt he could hear me. He begged us not to leave him AGAIN, and I just looked over his head to my husband for strength. I didn’t know if I could leave him again. My heart screamed for me to take my baby home, but my head knew that would be a mistake. I just stared into my husband’s eyes, through silent tears that I couldn’t let Javan see.

Three female nurses came to take him back to the unit. He wouldn’t let me go. They tried talking reassuringly to him, but he just couldn’t let go. My husband and I pried him off of me as two male nurses joined the fray. We were quickly ushered out the nearest door and his screams followed us across the parking lot and to the truck, where we both fell to pieces. A few seconds later, another male nurse shoots out of the adjacent building in front of us and runs full speed toward Javan’s unit. He saw us crying in the truck and locked eyes with me briefly as he bolted towards my son. It felt like we were back to this:

We called an hour later and talked to Javan and he sounded perfectly fine. Just normal. I guess the nurse was right when she told us he doesn’t stay that way long after we leave. That felt reassuring to me and bolstered my heart for another week of separation. I still don’t have good information on his release, other than it should be a matter of weeks, not months, until he gets to come home. I was glad that we had a Halloween party to attend that evening to distract us, because coming home without him is excruciating.

I hate that he has to miss his 12th Halloween. He absolutely loves dressing up for trick or treating. We’re trying to create a route of friends and family in our town that will do trick or treating for him in November. I’m hopeful that he can be home in time for Thanksgiving!

Hospitalization #8, Days 4-12

This is now Javan’s longest hospital stay to date, as our insurance has always tapped out at 11 days. Not that they’re being any help at all this time. Insurance flat out denied him coverage for this stay, even though they do cover long term hospitalization. I knew this would be out of network, but it was the only choice. Now they won’t help at all and I don’t understand why. I have no idea what that means going forward, but his on site psychiatrist informed us that since it’s a state hospital, they won’t send him home until he’s ready no matter what.

We had a team meeting Wednesday of last week with his on site psychiatrist, psychologist, social worker, and a unit nurse. They were all very nice and seemed to have everything under control. They asked us a lot of questions about what lead to him being admitted and my cheeks stayed hot with anxiety as we answered. They probably wondered why I looked like a tomato. It’s difficult for me being the center of attention of a group of people who are trained to analyze my facial expressions, body language, etc. And even though I don’t think they blame me, almost all of Javan’s struggles revolve around me so it’s easy to fear that I am the problem. In the end, we decided to try him on a very low dose of Lexapro, as the doctor said autistic children are particularly sensitive to antidepressants and have to build it up slowly in their system.

We got to visit with him for 2 hours before the team meeting and it seemed like he was adjusting some. He looked healthy and clean and was far less clingy. He seemed much happier and joked around with us quite a bit. He was unable to part with us willingly and had to be helped to his unit by two meds techs. That part is always hard.

We talk on the phone three times a day for 10 minutes each. He told me that since our visit he’s been going to school at the hospital and actually enjoying it. He’s going with the younger elementary kids, not the kids in his unit as he’s not on the same level as them. From some of the questions he’s asked us over the phone about stuff those kids have said, they’re also far above him in worldly knowledge. I do worry what all he will learn there from the other kids. He’s their size and age, but in reality he’s like a 6 year old surrounded by 12-15 year olds…vastly different maturity levels and interests. So far he’s encountered several new curse words, at least one sexual reference that he thankfully does not understand, and a possible gang sign that I told him probably meant peace. He does say the other boys are nice to him though and he considers them friends, especially his ‘best bro’ who was admitted due to committing some felony or other.

He’s been eating the food they bring him. He told us today that he ate salad with thousand island dressing! SALAD! That’s way new. He’s showering most days and keeping his hair the cleanest it’s ever been. He’s being a model citizen. His only complaints are that he misses us and he’s bored a lot. He said this is the best hospital he’s ever been in.

Since the first two visits went so well, we were granted a 4 hour on unit visit Saturday. Javan seemed perfectly happy and well adjusted. He was so far from clingy that my momma’s heart really ached for more cuddles, but I let him take the wheel on that one. The only thing ‘off’ I noticed was that his eyes stayed dilated the entire time, likely due to the new medication. He proudly showed us all the pictures he’d colored in the Avengers coloring book we sent him, all the sticker scenes he’d completed in the sticker book my mom sent him, and all the pictures he’d found in his look and find book. He’s found those pictures so many times he knew instantly where they all were. Luckily, his little cousin is lending him a new look and find book to ease his boredom.

We played a game, traded out some of his readers for ones from home, but mostly we just sat and talked. He was sad and disappointed when our visit was over, but for the first time ever, he went willingly back to his room! He even asked the nurse as we said goodbye, “Do I have to go willingly?” to which the nurse replied, “I’d prefer it if you did.”

He seems to be doing great there. The doctors are unable at this time to give us a timeframe of when he might be released, but we do know our next visit will be a 4 hour off unit visit, meaning we can go outside and anywhere in hospital grounds.

After this visit and all the changes we’ve seen, I came home and reflected at my art table on how I could express my feelings visually. This is what showed up a few hours later:

He’s no longer crying. No longer drowning. The storm has died down. The sea is calm. We are still separate and will be pulled in opposite directions as soon as we let go of each other. But we know we are both safe and being carried to safe places. We know we have a method of reconnecting when weather permits. We are still close to the sea and it still reaches up to splash us now and then, but we are safe and relatively dry. We are OK.

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.

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 Struggle™. 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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