It’s Like Spitting on a Bonfire

“It’s like spitting on a bonfire.” The exact words the play therapist said to me on our final visit. About play therapy, other behavior therapies, anything pretty much. There is no water hose, no fire rescue squad,  that’s big enough for our burning boy. That’s how I interpreted our conversation anyway.

Psychotic. Psychopath. Sadomasochistic. Not interacting with reality. The words of therapists, doctors, and psychiatrists have finally collided and formed a dizzying whirlwind in my mind and heart. I can’t make sense of anything. Of my son. Of myself. Not anything.

A nightmare. I’m walking alone through a dark, abandoned playground. Not sure how I got here. Not sure where I’m going. The fog is so thick around me that my breath echos back to me as a loud, terrified beast of its own. The merry-go-round shrieks piercingly as the wind pushes it slowly around, as if to entertain the childish spirits of the night. There is movement to the right. I turn to look. My son is playing alone in the sandbox, his back to me, chattering away at his shovel, oblivious to the world around him, to the darkness. I call out to him, but my voice is faint, it can’t pierce the fog. He doesn’t hear me.

I notice a rope being pulled tautly in a game of tug-of-war. Something heavy suspended over my son, something large. It raises and lowers as the war goes on and I know that if the wrong side wins, he will be flattened. I notice people, people pulling on this side of the rope. My side, this must be my side, I know them. There’s the psychiatrist, dressed in his work suit, pulling lazily with one hand, smiling at me welcomingly, and finishing up a cup of hot tea from a dainty china cup. There’s the therapist, behind him, putting all of herself into it, but she’s so tiny, not strong enough, she weighs nothing. Other figures, shapes from the past, half-remembered through the fog. I stagger in front of them all, my legs too heavy to run. I grab the rope and pull with all I’ve got, but it isn’t there. All I’ve got isn’t there. It’s weighted down by something inside of me. I can’t see through the fog. I can’t see what’s on the other side. What’s pulling back. But I have a feeling, it’s not trying very hard, it’s playing with us, it’s drinking it’s own cup of hot tea and enjoying the puppet show. My limbs are heavy, my mind numb. I can’t pull hard enough, I can’t form the words or muster the energy to shout at the others to put it into gear.

I woke from that nightmare drenched in sweat, and numb. And my heart has never left that playground. I’m still trying to pull, trying to speak, trying to call out. But I can’t. It’s all so surreal. I can’t understand anything.

The Price of Hope

These past few months have been hard. Really hard. Hard on my son, hard on me and my husband as individuals, and hard on my marriage. August was full of anxieties – anxieties about events that he was excited about, that he wanted to happen, but anxieties nonetheless. His birthday fell mid-week this year, so we decided to do a super small family only party the weekend before and then an even super smaller friends only party the weekend after. That way the social expectations of a large party with many people, activities, and gifts would not get in the way of his enjoyment. He did fantastic at his parties, absolutely wonderful. But the feeling of “something is coming,” something different from the norm, makes him tense.

Also, the Friday after his friend party, we left for Iowa for a 9 day trip to see Javan’s aunt and uncle and newest baby cousin. That one he had more mixed feelings about and the anxiety was greater. He would be leaving home for a long time, leaving dad and his dogs and his bed, leaving normal. Not to mention that he had been worrying for approximately 9 months about everyone falling in love with the new baby and treating him like yesterday’s trash.

He does great on trips. Usually. The trip to Iowa left me pulling my hair out. But we made it. We got there on a Sunday, and his behavior was absolutely horrific from the start. Embarrassing, really. I love my brother and sister in law, and I didn’t want them thinking that as first time parents they would never let their kid act that way, or whatever. The good news is that he never once showed aggression toward the baby, but only love and gentleness. I was soooo relieved. But when he wasn’t directly interacting with her, he was being as ferocious as possible. Wouldn’t obey a single thing an adult asked of him, ran away from us, threw stuff, screamed and cried…atrocious. Humiliating. Did I mention that these are Javan’s godparents as well? If something were to happen to Japheth and I, they would inherit our kid. I know if I were in their position, with a new, perfect, innocent daughter, I would be terrified of inheriting this boy. That was really hard for me.

And, maybe even harder, for the first several days we were there at least, I felt like we were ruining everyone’s vacation and all the plans that had been made. Javan’s tummy began hurting the very next day…he hadn’t made a bowel movement in at least a week. I knew that it was just due to the parties and the trip and everything, and had been increasing his daily laxative, but it wasn’t helping. So, Monday and Tuesday, we couldn’t leave the house. He sat on the potty fighting me for most of the time. We did all kinds of horrific things to his body Tuesday trying to get the bowels to move. So much laxative that the word overdose is a hilarious understatement. Suppositories. Enemas. We’ve been there so many times before. And I hate it more every time.

This time, though, the enema wouldn’t work…like, I couldn’t squeeze the bottle at all. The bowel was obstructed. We’ve been there before too, but never to this extent. So, Wednesday we went to the ER. He was given a really scary sedative and the obstruction was removed. I didn’t even notice the poop. I was too busy trying not to freak out about his face. They used what they call a conscious sedative. Basically, his eyes stayed opened, but I watched him leave them. Worst feeling of my life. He wasn’t there. I held his head and talked to him the whole time, but he never saw me. Afterward, the doctor told me the impaction was about the size of an eggplant and that even one of their super-enemas wouldn’t have been able to get that thing out. So, I guess that’s affirmation that this hospital visit was the right choice. As he was coming around, he asked in a super scary monotone, altogether autistic, tone, “What’s going on?” He was still staring, didn’t have control over his body at all. He kept asking me why I had three heads and why I looked like a scary monster. Thankfully, he was rational enough to listen to me when I told him to close his eyes, that it was all just a trick the medicine was playing on his brain, and that I was still just Mom. Then he slept for a few hours, and when he woke up, he kept trying to sit or stand up, but he had absolutely no control over his muscles and just kept flopping over…it was really hard to keep him from hurting himself.

The scariest and most traumatizing part of this experience for me as the parent, is that I experienced what life would be like watching my son fall deeper and deeper into autism. If that happened, I don’t know what I would do. I don’t want my boy to leave like that ever again. Ever. The only time I’ve ever seen him slip into a deeper autism like that was after he had his four year immunizations. I was so scared after that experience. And I am now more terrified than ever to further immunize him. I don’t know what I will do about that, but I will have to decide soon.

Since we’ve been back from Iowa, about 6 or 7 weeks, his behavior has been unbearable. He is so aggressive, so so very angry. He’s defiant to an extreme. He does and says things to hurt me or his dad and then smiles and laughs and takes joy in our pain. He does not resent hurting us. Try to balance this with the sweet, loving boy who wants to cuddle endlessly on the couch. It’s impossible. There is no balance.

Last week, we had a psychiatry appointment. At this appointment, Javan shared with his doctor some specific things we’ve been dealing with that I can’t even speak about on my blog. I’ve never kept things from my readers, but this is so intense I feel like I have to guard him. The psychiatrist said several times, “This scares me.” “There isn’t a medicine for this.” and “I’ve never seen this problem so intense in a child this young.” Every single professional tells us something along the lines of “I’ve never seen this.” We’ve been seeing this doctor for about 18 months, and this is the first time he’s said that. I had such hope that Javan really wasn’t that bad or that different, but there it goes. He is still a wonderful doctor and still wants to work with us, but this is the first time he’s admitted that this might not get better. So I asked what are we supposed to do if medicine can’t help? And he shook his head and responded, “We just hope behavioral therapy will work.”

We do have a play therapy appointment scheduled for mid-October. We’ve tried this twice before and each time was spectacularly insufficient. I have a feeling that this lady can help. I talked with her on the phone for about half an hour and she feels like she can handle Javan. Most people, most professionals even, tell me that they are not qualified to handle a situation like ours. That can leave you feeling very hopeless right there.

Hopeless is a really, really good word to define how I’ve been feeling. Depressed. We didn’t do school the last three days of last week because I just couldn’t take the constant tug of war between Javan and me. Everything, absolutely everything, is a fight. Our world has shrunk so much that I feel more isolated than ever. I’m even becoming isolated in my heart. We don’t go to friends’ houses because Javan will hurt their kids, their pets, them, their stuff, anything. I can’t count the number of half-filled shopping carts I’ve had to abandon because his behavior was impossible. I desperately need to get my car registered…it is way past due and we’ve had some close calls. I tried this week, but there was absolutely no way I could hold a conversation, much less do paperwork, with his behavior like it was. No way. Things aren’t getting done. Life isn’t getting lived. And it has to change.

So, we’re going to change it. I’ve grasped at so many straws trying to make our life more livable it’s not even funny. Many are documented in this blog. Some are too shameful or silly to speak of. Remember when I tried to train Morton to be Javan’s service dog? Yeah, right. I don’t have the time or physical or emotional energy to invest in training a dog that really doesn’t have the temperament for it anyway. I did tons, and I mean tons, of research online recently looking for how to get a service dog for…whatever it is that Javan needs. And I found that there are way more kinds of service dog than I knew. Autism service dogs are pretty easy to find, but they won’t be enough for Javan because his needs far surpass that of just autism. His bipolarity, manic and possibly psychotic episodes, and the resulting aggression are not typical in autism. I found one man that can provide a dog for us. One. And we’re going to do it.

This guy has been training dogs forever, all types of service dogs, even police dogs. His name is Bob Taylor and his organization is called DogWish. I wrote him an email and said here’s what’s going on can you help. He responded that same day and said, “Yes, I can help!” He can train a psychiatric service dog that can foresee and forestall aggression, get between Javan and a person he would otherwise hurt, tether to Javan and keep him from running off when he’s scared or angry, even lay on top of him if he needs deep pressure during a rage.

There will be sacrifices, but this is the price of hope. We will need to find a home for our Morton, and possibly even for Pepper although I haven’t come to terms emotionally with losing her. We are going to sell things to earn money and we will have to work hard to fund raise. We will need to travel to California once the dog has been trained so we can learn to work together as a team. This is a lot of change. I should buy stock in Miralax. I needed hope and couldn’t find it. If this is a straw to grasp at, then so be it. But maybe it will be the miracle we need to pull us out of this desperate isolation. We’re taking a leap of faith. And I have hope once again.

Falling from the Hilltop

I had to pull Javan out of bed super early this morning while he was still fast asleep. My mom needed her breaks checked and didn’t have a ride to work, so we were there for her just like she’s always there for us. So, I was super surprised when on the way home Javan says, “Let’s go ahead and do school right when we get home!” I was like, huh? Thinking in the morning?

We’ve recently reintroduced a favorite tv show that had been taken away maybe six months ago – Transformers. It was taken away because it was too much fighting for him to handle and it was making him violent. So, since he never stops asking for it, we decided to reintroduce it very slowly by allowing him to earn one 20 minute episode for each day of school completed without complaining and with doing his best work. Thus, the extra motivation. Not the intrinsic motivation to learn that I hope to see in him in later years, but still, he wantedto do school. And when we got home, he did his entire day’s worth of work in about an hour. Usually, he would have done this amount of work with two to three breaks in between, but he refused to take a break. So I went with it. School was finished by 9:15. Awesome!

The day pretty much went downhill from there, but hey, at least we were at the top of a hill for a little while, right? We went on a walk around the neighborhood and noticed that we had gotten new neighbors a couple houses down where some friends of ours and Javan’s used to live. Javan normally loves welcoming newcomers to the neighborhood, at least adult neighbors. We just got a different new neighbor last week and he welcomed her excitedly and asks to go back and see her again every single day. We don’t, by the way. I tell him that if adult neighbors are outside, then we can talk to them.

Well, we see that our newest new neighbor is sitting outside, so we go up to introduce ourselves to him. Well, I did. Javan stayed out on the street and made a growly face. He did eventually come closer with the growly face, but even when I got down on his level and held him firmly by the arms to decrease the likelihood of the man getting his face clawed off, and even when I explained that there was also a lady living there and a 10 year old girl but they were sleeping, he never decreased the intensity of the very unwelcoming growly face. As he tromped off down the driveway, I very hurriedly tried to explain that Javan has Asperger’s and Bipolar, but the man was interrupting me with an, “Oh, he’s fine,” and I’m sure it was too hurried to even understand anyway, so I just walked away feeling awkward and slightly embarrassed.  Let’s hope encounters with the ladies of the house will be more welcoming.

Okay, so back home for a talk and some snacks. Food usually helps the grumpies. We hung out in the house for a while  until he got bored and started kicking the dog in the face. Even after time out, he kept lying about it and saying he was “just exercising.” He keeps doing this! Hurting us or the dogs and then lying about it. It’s kind of driving me bonkers. Kind of.

So, to get him out of the house, I got a blanket and a sketch pad with colored pencils and we went outside and sat under a shady tree.We’d already talked about this idea for several days – I want to do a sort of nature notebook where he finds one living thing like a tree or plant and draws it in his notebook once a month to see how it changes with the seasons. We tried to find something at the park yesterday at park day, but that was yet another fail. I didn’t even get to say hello to one single other mom. Not one. We were there that long. But he wouldn’t settle on anything to draw there, so we chose a tree outside our house today to draw.

He set the notebook up against the tree trunk, and said, “Nope, it’s not big enough.” Man I wish I’d have gotten a picture of that. I explained that he drew pictures of me all the time and I’m bigger than the notebook, too. You just draw it so it will fit on the page. Then came the choosing of a brown…I put two shades of each color pencil in his school box to give him some variety but not too much. He got the two browns, walked over to the tree and held them up to the tree bark considering shades for quite some time. He then chose “the right one” and settled on the blanket to draw for approximately 5 seconds before he picked up the other brown and tried to stab me with them both. When he came toward me on his knees, I pushed him back away from me to avoid the stabbing. His bottom fell hard on his shoe and then he cried loudly for way, way longer than was strictly necessary. The crying has to stop! But it doesn’t.

The Tree

Javan Drawing the Tree

Drawing time, over. Mommy’s patience, gone. We got home and he calmed down, but when I talked with him about what happened he kept insisting that he didn’t try to stab me with the pencils. So, I started doing random things and then telling him to tell me I did that. He knew what I was doing and refused. I kicked his shoes across the room (in a calculated, safe way) and told him to say, “Hey, you kicked my shoes!” He wouldn’t. So I said it for him and then said, “Nu-uuuh!” which is his usual denial when he is accused. Then I said, “Does me saying ‘nu-uh’ make it true that I didn’t kick the shoes?” He said yes…grrrrrr! “No, Javan, you saw me kick the shoes. It is true that I kicked the shoes. And it is true that I am lying when I say I didn’t kick them.” I tried this with a few other things, all to no avail. I really don’t know whether he gets it but is just too stubborn or if he doesn’t get it or if he even wants to get it or not. I had reached my limit by then and decided to just lay him down for nap 45 minutes early. He did get woken up early after all. Or that was my justification. All I really wanted was a chance to catch my breath and lower my heart rate. And now that I’m done venting about it, I will either go take a nap myself or enjoy some quiet time watching a pointless tv show just because I can. Speaking of tv shows, I have come to the obvious conclusion once again that Javan is not ready for Transformers at this time. I need to find some other motivator. And, let’s don’t forget, it’s Javan’s Spend the Night night with Grammy! Woot!

School with a Smile?

It’s super late and I’m super tired, but feeling relaxed after a night out with my besties. Hubby had a sort of hard time with bedtime, which is not unusual and is not easy to deal with even when we meet the bedtime storm as a united front. But, I am so glad he weathered it alone, because he knew I needed a break. And I feel like a new woman! Thank you, Husband! And thank you to every husband, family member, or friend who helps a struggling mom like me get a break, even at a high cost to yourselves. It matters. It means that maybe tomorrow I won’t yell when I might have or I’ll have the self-control to calmly think through a behavior to arrive at it’s logical root when I otherwise would have just spanked and sent him to his room.

Even if you are not someone who can physically step in and take care of a special needs person to give the caretaker a break, just letting them know that you care helps. I’ve had several short emails and facebook messages from friends who know I just need to hear “I care.” Even if they don’t know what else to say, because realistically there is nothing to say, that is enough. Knowing that they aren’t fed up with me and my whining and my challenges and my inability to be physically there with and for them, is a huge factor in my emotional stability.

Let’s talk about school, ok?!? So, we’ve only been doing the time4learning “computer school” for two days now, and I’m loving it! Javan actually likes school! He may whine a little when it’s time for school to start, because he still thinks it will be too hard and too boring, but once he starts, he likes it. Here’s proof: a picture of him being silly and smiling WHILE doing school!

Javan enjoying school on the computer. ENJOYING!!!

He did one of these lessons six times today. SIX! Because he wanted to. He did fine the first time – I didn’t ask him to repeat it. What an awesome feeling. There is no way I could teach him a lesson on high frequency words in person and be asked to repeat it with him six times. Ever. He even waited excitedly all day to show his Dad how he does it! And, he reread the decodable story to his Dad when he got home. I had a hard time getting him to read the story, because “read a story” sounds big and scary. And sentences look big and scary. But once I got him to do it, and remember that he can do it, he did it easily and with joy. He reread it to his Dad flawlessly and was so proud of himself!

He told his PawPaw about school at lunch and his PawPaw asked him, “How did you read a whole story?” to which he replied, “With my awesome reading skills!” Music to my ears!

We ran into a small amount of frustration with the math today, because he is not at their first grade level currently. It’s just because the curriculum we used last year doesn’t quite line up perfectly with the time4learning curriculum. So, we went through a few of the kindergarten math lessons together until we found “the right spot.” We both agreed on where we needed to be, which is basically the second half of the kindergarten year, and voila! Problem solved. No big deal. Ahhhhh, no big deal. It’s about time something felt that way!

As a member of Time4Learning, I have been given the opportunity to review their program and share my experiences. While I was compensated, this review was not written or edited by Time4Learning and my opinion is entirely my own. For more information, check out their standards-based curriculum or learn how to write your own curriculum review.

The Middle of Mania

This is so hard. Javan is so hard to be around these days. I am metaphorically pulling my hair out. I may have it somewhat together on the outside, but on the inside is a little girl throwing a nasty temper tantrum screaming, “It’s not fair! It’s NOT FAIR!” I feel so trapped with him, too. I can’t visit any of my friends because he will hurt their kids. Or them. Or their dogs (Yes, he did.). I’m lonely. And I’m fearful that I will lose friendships because I am simply unavailable to invest in them.

A daily picture of our lives right now includes long, intense, loud crying/screaming bouts. Long, intense, loud talking bouts. And short, intense maniacal laughing bouts. Those I don’t mind as much. But the crying absolutely must stop. It must. But it doesn’t. He cries about everything and nothing. Of course when he doesn’t get what he wants, even if what he wants is physically impossible to have on this earth, there is no reason to him in these moments (or hours). And other times when he’s perfectly fine, having a good time, and then up out of the blue he misses someone and cries for hours wanting them. And the talking. Oh, the talking. It takes absolutely forever for him to express any idea, but he goes on about things endlessly. With looooong pauses between parts of sentences, and sometimes forgetting what he was talking about and asking, “What was I saying again?” which usually gets me in trouble because I have tuned him out. I don’t mean to tune him out. Usually. But the way he goes on, my mind wanders off on it’s own.

The laughing is a different story. His maniacal laughter takes two forms. Pretty and ugly. I love the pretty kind. It’s probably only pretty to those who love him dearly, and quite bizarre to strangers in line at Panda Express. The thing is, when he’s happy, he laughs. Really laughs. A long belly laugh where others might only smile or do that quiet nose laugh thing. It’s the kind of laughing we might all do if we freed ourselves from social restraints and expectations and just lived out our emotions. The ugly kind of laughing is just infuriating and I don’t understand it besides. It’s the quieter laughing he does with a devious look on his smug little face when he hurts me or sees that I’m unhappy about something. It hurts my feelings. A lot. And I don’t get it. I don’t know what he does or doesn’t understand about my feelings. I mean, when I have to leave my full shopping cart in the middle of Target and haul him out to the car from a failed shopping trip and I’m about in tears, and he’s laughing it’s really hard not to smack that grin right out into the parking lot and pull a big fat “Towanda” on it (my favorite scene in Fried Green Tomatoes.) But if he really doesn’t get it, and I don’t know that he does, if he really can’t understand my emotions at all, then it makes sense for him to be happy that he wanted to leave the store and we left the store. He might not be laughing that we left at my expense, which is how it feels. He’s just happy he got to leave. Period. I wish I knew. I want to know for sure that he’s not just being an evil little jerk in a cute kid costume.

I don’t know if clumsiness is another sign of mania in children, and I’m not sure if I’ve noticed it before in manic phases, but let me tell you how clumsy this kid is! He has fallen on his face, and I mean hard, about 5 or 6 times this week. His side is all scratched up from armpit to hipbone from falling in the dirt and skidding on sweet gumballs. He  just runs and runs and runs…and suddenly he trips and is flying through the air and lands like a pancake because he lacks the reflexes to land less painfully. Have I mentioned the elongated crying episodes? Reference above.

But the worst of it is his insistent planning. He comes up with a new plan for something or other about every five minutes. He talks like he’s the boss and when he says, “Ok. Here’s the plan,” he thinks that means it will happen. No matter what he says, he really and truly thinks if he says it with enough certainty, then it is certain to be true. Like he can speak “his truth” into existence. Try telling him what the real plan is and get ready for the screaming. Reference above. Sigh. He even came up with a plan earlier today to move all our stuff into another house, and in that house we would all follow his rules. Sheesh.

And the trapped feeling. I mentioned not being able to see friends. But I can’t even take him anywhere by ourselves! We went to a local library event that we had signed up for earlier this summer. We even had to do a reading log to enter him into the prize contest. He had his little heart set on winning a blue guitar. So, we get there and some guy is setting up for a magic show (which we were not prepared for) and we can smell the hot dogs ( which we were prepared for) but we couldn’t have them yet. Javan lasted about 7 minutes before I had to drag him out of there, and that was  after  a calm-down talk in the bathroom. There were people there with curly hair. Yeah, so a 25 minute drive to the library and keeping a reading log all summer for that? The growling and clawing that he was doing toward the curly haired people was being returned to him with a death look from Mom. So we went across the street to the park. I didn’t really want to waste the drive and they do have a cool park. He played some. Then fell flat on his face. Again. In the mud. Grrrrr.

A few days later, we visited another park. The brand new splash pad park we got in town recently. He didn’t do terribly. Well, he didn’t hurt anyone. And he played nicely (by himself, but nicely) for a while before the claws came out. Then we went over to the dry part of the park and I pushed Javan on his favorite swing, one of those intended for handicapped children that kind of cradle your body when you sit in them. It’s kind of over by the baby swings, and there were other moms pushing their tiny ones in the swings wondering why my ginormous six year old was being swung next to them by his mother. Then the freaking claws. Again. Toward twin two year old girls a few swings down – with curly hair, of course.

“They’re bad girls!” He repeated loudly as I tried to calm him. The other moms never spoke to me, only looked on in bewildered discomfort.

“Ok, Javan, how do you know they’re bad girls? We know that people with curly hair are just people. Not bad people.”

“Because I used my Super Knowing Technique!”

“Ok, how does it work? How do you know they’re bad?”

“I just did a science experiment in my heart for a long, long time until my Super Knowing Technique worked. Now I know they’re bad.”

Aaaand, the moms still look on, occasional nervous chatter escaping their lips. I know I shouldn’t judge them any more than they should judge me, but my heart cried out in anger, “So what!?! You think you’re perfect? You think your little darlings are perfect? They might be just like him. You might be ME in a few years!”

That kind of anger is useless and wrong. I know. But it’s embarrassing to deal with everything alone. And it hurts to be silently judged and shunned. It hurts even more than being loudly judged and shunned, because you can’t argue with silence. You can’t explain yourself to silence. It wins.

My husband reminded me last night, or was it the night before? Everything is running together. He said, “I know Javan is going into a manic phase. But try to remember that it is a phase.” It will end. It will end.

Let’s add a tiny bit of brightness to the end of this post, shall we? We sort of started first grade a couple weeks ago. Homeschooling, of course. It was awful! Everytime my notebook would come out, he was instantly angered and refused to cooperate. So, I put the notebooks away. I bought a $20 a month online homeschool curriculum that was recommended to me on a special needs homeschool facebook page and we’ve started it. Today was our first day of it, and it was kind of hard to get him back to the computer after we would have a break, but he did it. He did all his lessons. And he was engaged with the animation so he didn’t complain loudly during his learning. I don’t know how long we’ll do school this way, but for now the notebooks have hit the shelf. Maybe we’ll do them in a few months. Maybe next year. Maybe never. It doesn’t matter because we have an alternative.

Also, although I know for sure he is not ready for this, I count it as a massive positive that he has been asking me if he can go back to the small private school that we started at this year. He did so awful there, and his classmates were mortified by his presence, but he’s asking for them back. He says he’s getting too much Mommy time (I agree), and he wants time with other kids. Did your jaw just drop? Well, pick it up off the floor because I know we’re not there yet. Maybe next year. Or the next. Or the next. But for now, at least he  wants it, even if he doesn’t know what all it implies. Maybe we’ll try to visit there for lunch and recess once a week and see if we can introduce “real school” to him bit by bit. Even if it doesn’t work at all, even if we can’t even handle a simple recess, I know that this is a sign that he will continue to want friendship and independence when he’s ready to achieve it.

Calm Seas Behind, Rough Seas Ahead, and Our Encounter with Playboy Zebra

The past several months have been GOOD. Guess I’m just not much of a summer blogger. Javan has been easy going and even sleeping a ton (which helps because he’s still full-throttle all the time). He has been sleeping about 10.5 hours a night PLUS a 1-2 hour nap. Whoot! He has even had a few moments that have taken my breath away, like introducing himself properly to other children! Not consistently. Not even most of the time. But he DID it!

Last week, our family had the best stay-cation we have ever had! My husband took the week off and his brother, sister-in-law, and their FOUR kids came to stay with my husband’s parents. The last time we saw their family was on their turf up in Indiana for Christmas. Javan did awesome then! I was dreading being “stuck” up there restraining him and isolating both of us if he didn’t adapt well and was being aggressive, but I was so pleasantly surprised that he did terrific with his cousins and the new environment.

This time, I knew if he did not do well, we could retreat to home, so that was semi-comforting. I also knew that this time, they’d be on HIS turf…HIS Weebow and Pops’ house, HIS playroom, HIS swimming pool, etc. Guess what? He did great AGAIN! It was a big week full of large gatherings and events…Independence Day (which also happens to be my birthday, my anniversary, and my husband’s birthday. And family events every day, whether it be with just us and the Indiana Clan, or the ENTIRE extended family, which is quite large but Javan has been around them a lot.

Javan did best with his two older cousins, the girls, who are one and three years older than him. He showed no aggression or resentment toward them at all (that I saw anyway). He even held hands and walked with the oldest a few times and had a blast giggling with her when she rode in the back seat with him. He did slightly less well with the two younger cousins, the boys, both due to the fact that they are boys and they have less communication and adaptive abilities than older children. Older kids give him somewhat of a “social cushion” because they expect him to act like a little kid and they can notice that something is “weird” about him without voicing it or calling him out on it. Even so, he didn’t do terribly with the younger boys, and overall, he had a spectacular visit with his super-spectacular aunt, uncle, and cousins.

In other news, I’m feeling anxious and discouraged because I’ve noticed a pattern emerging that I am all too familiar with…he’s slipping into a manic episode. My husband and mother have noticed too. I pray that it will not be a full-out regression to “the places we’ve been before.” He hasn’t been in a depressive stage, which is the other end of the spectrum from mania, but he’s been in a calmer, more sedate, reasonable state. Ahhh, reason, how I love reason. But I can feel it being pulled out from under my feet…again. Not quickly, but inch by inch, so that I can feel the fall coming and I’m left wondering how long I can gracefully keep my balance before I fall smack on my behind.

Javan was making friends. He was forming a relationship with one new neighbor girl, Raylin, who I’ve posted about before, in which I could trust him to be with her out of my direct line of vision, and not worry about anyone getting hurt or being in danger of any kind. About a month ago (I’m guessing…I stink at keeping up with time.), he decided that she was a “baby” and he won’t hang out with her anymore. That’s it. No transition. No big hoopla. Just, “Now we’re not friends.” And he’s stuck to his resolution, well, resolutely. He will never be her friend again. Raylin is one year younger than Javan. There are several other kiddos that he’s done the same thing with recently. Mostly kids a little younger than or the exact same age as him. And he means it…he hates them (at least for now). So, that means that if I’m friends with their parents, I don’t get to see my friends, hang out with other moms, without him ruining the whole thing. Isolation. I do take one night out a week to be with my friends kid-free, but one night a week! And then back to isolation.

And we’re just starting the downward spiral into mania. I know, I know. You’re thinking I’m pessimistically predicting a catastrophic future without just cause. But we’ve been through this cycle so many times! We can see it coming. Call it a bipolar prophesying borne of experience. In fact, I remember predicting one such episode about a year and a half ago (and again, I’m bad at remembering time frames, so I’m probably off on that estimate). I had been working at a local daycare and loving it. I loved the kids, I loved the adult interaction with my co-workers, I loved the kids some more. And Javan was able to participate free in the late afternoons. Free social interaction under another authority figure besides Mom! I was all signed up and ready to start the summer program, so excited about being with “my” kiddos and for the opportunity for Javan to participate. I had even already bought our matching summer camp T-shirts! Aaaaand, then we saw it coming. I had to talk to my bosses, who I had grown to love dearly, and tell them that practically last-minute, I had to quit. Based on a prediction. Based on what they couldn’t see yet. It pretty much sucked a big one.

Luckily, my bosses were both women of grandmothering age who had reached the level of wisdom to know a mother’s instincts should not be belittled. They supported me and loved me and encouraged me even though I was putting them in a pickle. And we ended up being right. He did enter a manic stage and it wouldn’t have been okay for me to have work obligations and it wouldn’t have been okay for him to be in a summer program with other kids and expectations that he wouldn’t have been able to meet. I still really miss that daycare.

So, what do we do? We wait. There is no way to prevent a manic episode. At least I don’t think so. I’ll have to research that after this killer stress headache goes away. We wait and we see if we can weather this storm without medication changes or adjustments. We pray that Jesus calms the storm. We pray that we can walk on the water with him without fear and without falling.

You’re probably wondering what indicators we’re seeing that lead us to this assumption that a manic episode is ensuing. Off the top of my head: constant talking, singing, or babbling…or babble-singing…sometimes it sounds like a Japanese kid is singing off-key in the back seat of the car…for a really, really long time; extreme disobedience, extreme hyperactivity, I could go on.

Let’s talk about extreme hyper-sexuality. Yes, that’s part of a manic episode, apparently even for young children with little to no knowledge of things sexual. My son knows exactly two things about male and female bodies: women have boobies, and they have different “peepees.” Oh, and women have babies…so that’s three things.  Anywaaaaay, this is coming up because of an incident we had a few days ago during our stay-cation. We were at the lake hangin’ with the family: grandparents, aunt and uncle, cousins, us. There are very few other people there, as is the usual for this particular lake. But there is this one well-developed young lady, lookin’ all hot in her tiny zebra-striped bikini, playin’ with her little brother and his friend in the water. He swam/walked over to them (it’s a very shallow lake). I was like, yeah, they probably don’t want to talk to us, but he wants to be social, and I’m not gonna stop him from saying hi. So he goes over. Does he say hi to the kids? No. Course not! He says hi to the hottie with the Playboy bunny belly ring! He gets in her personal space – I say “Javan. Personal Space,” like I do so many times every single day. Instead of him backing off though, he goes in for a hug. Well, he hugs a lot. Even at inappropriate times with inappropriate people – he does have Asperger’s after all, a disorder in which inappropriateness is widely prevalent and somewhat expected.

Mid-way into the hug, the unexpected happens. Playboy Zebra sort of gasps and shoves his body away from her. I was like, “Dang, I guess she really didn’t want a hug!” Javan swims off and I, of course, go after him. He whisper’s a “secret” in my ear with a smile in his voice: “I was trying to touch her peepee.” OH. MY. GOSH. I told him we would talk in a minute and I told him to stay where he was. I went directly to the girl/woman/whatever and said, “Did he do something inappropriate when he hugged you?” She smiled and said, “He tried to grab my butt.” I apologized profusely, explained a little about his Asperger’s and Bipolar, or maybe just the Asperger’s, I can’t remember. She smiled and said, “That’s okay, I understand. I work with kids like him.” So, so very glad and lucky that this happened with a person who has understanding! And could likely already guess at the things I told her about him. Then I had a good talk with Javan about how it is never okay to touch anyone there. Ever.

Why did I share this? It makes me vulnerable. It means people might whisper things about my son or even me behind my back. It means some people who read this might not want my son around their daughters. That’s a lot to risk. It is. But I am sick and tired of hiding. This is my life. This is my son’s life. And you can be darn sure there are other mothers, fathers, children, families, hiding because they think they’re the only ones. I know I do.

Unexpected Victories and Cruel and Unusual Punishments All Rolled into One

Classic Aspergerian Quote of the Day: When I was doing my best to get Javan to sit at his desk and do his work, he picked up his materials and took them to a favored work area under the drafting table and said, “It’s much more feasible to do it under the table.”

Well, isn’t it though. It amazes me that a kid who can correctly use the word ‘feasible’ also feels the need to be under a table to focus on his work. He’s quite a conundrum. Conundrum…that should be his next word, right?

School this morning went amazingly well, partially due to the lack of teachable letter ‘Xx’ activities. He was better able to focus, and to know what he needed in order to achieve focus, than I’ve ever seen him in our school setting, and I’ve been homeschooling him for six months. I usually feel like I have to hunker over him and direct every thought process to get him through an activity. Today, with two different paper and crayon activities, he did the work completely on his own. He didn’t even want me to watch him do the work, so that he could surprise me with the finished product. He colored. He matched words and pictures and glued them on by himself! Usually, I have to say, “Ok, now which word does this one match? Good, now get your glue and put some on the paper. (I always have to hold the paper still while he glues, because he can’t do both at once.) Great, now put the picture on.” Not today! He matched them, glued them on by himself, and shone when he showed me the completed project, which was 100% correct. I did not cry. But I might have in my heart. A little.

I have finally realized why he can’t handle scissors as well. He always got in trouble with scissors at his other schools. He’d hurt others with them or whatever. And he has always gotten in trouble with them at home, too. Not for hurting me with them, but because every time I’d tell him to cut something he’d do it wildly with purposefully uncontrolled cutting movements and he’d end up shredding whatever it was. Finally, FINALLY, he has spoken the reason for this nonsense! The sound of cutting HURTS him! And I have to admit, I can see his point. It is kind of a shrill sound. So, when something needs to be cut in the classroom, he steps outside the door and waits patiently while I cut it, and then he comes back in and continues his work. Voila! WHY CAN’T HE JUST TELL ME THESE THINGS IN THE FIRST PLACE?

Well, for those of you who know Javan, you probably know about this behavior pattern that he’s had his whole life of if he has great behavior in the morning, the afternoon will be TERRIBLE. And if he has a terrible morning, his afternoon will be AWESOME. Today was so, so indicative of that pattern. By the time he went to sleep tonight, I was thankful to God that I made it through the day without strangling him. The dishes remain untouched, the laundry is in stacks on the pool table, and I could care less. I made it through. That is all that matters.

Oh, how he disobeyed! I don’t know if this is just an awful disobedient phase or if it’s compulsion that drives him. I suspect some of both, but I see a high level of compulsory behavior going on here that really frightens me. When he gets an idea in his head, he is  going to do it. It doesn’t matter how many times I tell him stop or no or don’t do that or scream or yell or spank or time-out or, or, or. The thought must be carried out. And then the screaming rages he has when he is stopped from carrying out those plans of his…oooooooooWEEEEE, you do not want to be party to one of those. He’s aggressive and hits and kicks and calls you stupid and slams the door. He is absolutely furious and CANNOT understand the reason why you would interfere with these so obviously crucial plans.

I get so sick of him being RUDE! But the thing is, I really don’t think he CAN understand what rude is. Blah. Blahbitty blahbitty blah. That’s all he understands when I try to explain why his behavior is wrong, and “I don’t know” is all I EVER hear when I try to understand WHY he does the things he does. And yet, I continue to torture myself by asking.

I don’t feel like giving examples of the misbehavior today. I don’t feel like complaining. I’m worn out. And I WANT to remember the GOOD morning we had. I WANT to erase the negative memories and feelings of the rest of the day. I NEED to hold on to those victorious moments when he does the unexpected. I can’t expect it tomorrow, just as I could not expect it yesterday. But it happened. He did it. I don’t want to forget.

I will leave you with this endearing night time tale. He was sent to bed a full hour early, without the normal bedtime routine, which for those of you who know autism or know Javan, you know that change of schedule is cruel and unusual punishment. It was warranted. His pleading led me to reconsider and I told him that if he laid perfectly still and quiet on the pillow for 20 minutes, he could earn back his bedtime story. Not the full bedtime schedule, just the book. His response, as is so very typical of my kid, was to make sure and point out the illogic of my request by asking, “But it’s okay if I toot, right?” God, I love him.

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