I Don’t Think We’re in Traditional School Anymore, Toto

We’re two days into our first full week of homeschool this go-round. It’s been a very…untraditional…two days that have only solidified the rightness of our decision to homeschool. You see, Javan is hardly sleeping at night. He’s definitely showing other high signs of bipolar mania as well, but sleep is the one that effects us all the most.

He slept three hours last night. Three. And not much more the night before. By the time “school time” rolls around, there’s not a chance in, well, anywhere, that he’s going to be able to think clearly and cooperate. When I try to start school around the right time on a morning after Javan has been up all night, I’m often met with anger, defiance, and resistance. Instead of having to fight with a child that’s incapable of learning due to sleep deprivation (like I’d have to do if the homebound teacher were still coming out), I can enforce a naptime.

Now, as you can imagine, to decree naptime in the presence of this particular ten year old boy is to ensure a different kind of fight, but it’s one that I can usually win and that actually results in a mutually beneficial end game. I may or may not “get school done” later in the day, but the rest of the day is sure to go more smoothly once everyone is at least minimally well-rested. And I’ve been pleased with the amount of non-traditional learning that’s taking place even when our planned learning does not.

For example, here’s a picture of something of the resources we were planning to use for school yeaterday:

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Those resources cover history, art, spelling, writing, math, and visual literacy. Other subjects are covered on other days. Well, due to sleep deprivation, what we actually got done with that material is reading two pages of a history book during lunch. That’s it. Today’s school materials were not touched at all after that pitiful three hours of sleep. Napping was needed more than schoolwork, because survival.

But when I say learning happened anyway, I mean it. We saw Javan’s Weebo (gramdma) yesterday and while there he write this sweet love note for her and put it on her office desk:

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That’s not a lot of writing, but it is writing! And it’s organic, meaningful writing, which is worth ten times the canned, forced stuff. He had to ask me how to spell “buddy,” so that counts as spelling for the day. And I’m sure there’s a self-guided good citizenship lesson here if you want to get all teachery-sounding.

While at Weebo’s, he also designed and built this double-crane race car:

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What learning happened during the building process? Tons. Planning and implementation, creating structural soundness (he added the supports in-between the cranes after he realized they were a bit wobbly), problem solving, symmetry, work ethic (cleaning up after his building process), fine motor skills, and probably more I’m missing.

After Weebo’s, we had an extra half hour to blow before picking up Dad from work. Javan came up with the idea of bringing half-priced Sonic drinks to the techs at the airport fueling station who had let us in to see the super awesome jet last week. That’s economics as well as good citizenship  (giving, service). There were no planes fueling up when we arrived, but because they had no business, we got a free, unrushed tour of the aviation center and airplane hanger. We (mostly me) asked every question we could think of about the eight or nine different planes we saw. We learned that the wings double as fuel tanks! I had no idea.

Again, today’s lessons didn’t get done either. But this afternoon, Javan’s Grammy took him fishing at the park. They fed the ducks, Javan chased turtles, and he caught three fish including his first bass.

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Afterward, he was filled with renewed curiosity and passion about deep sea creatures and deep sea fishing. When we got home, Javan watched half an hour of a National Geographic documentary about deep sea creatures while I cycled the laundry. When I asked him if the documentary was any good, he replied, “It’s awesome!” So he got an entire afternoon of unplanned hands-on and self-led science study.

We didn’t get to our scheduled work or our books. I didn’t check anything off of my teacher to-do list. I recogniz that those things are important and we will have more success with them at times when Javan is more stable. But I bet he learned more in these two days of embraced chaos than he would have from any lesson I had planned. It’s so good to be able to go with the flow again.

We have a psychiatrist appointment tomorrow afternoon to get help with sleeping, so wish us luck!

Dragon Heart Academy Grand Reopening and a Magical Moment

Tuesday was Javan’s last day of public school. We have chosen to withdraw him for several reasons. The tipping point that finalized the decision for us was when I was informed that Javan would be required to take the regular fifth grade state test this year and would not be permitted to take the far more appropriate alternate test for students with special needs. While he might be offered modifications, such as having the test read to him and answering verbally, that test would offer him nothing but an opportunity to fail, and that’s the last thing he needs. The disparity between the work that was being sent home for him because it’s actually on his level and the sample test material from the Texas Education Agency website is comical. I was told that because Javan’s IQ falls in the normal range, state legislature leaves no room for argument about which test he would take, and I was given no reason why he was allowed to take the alternate test last year though no laws have changed in the interum.

That frusration aside, the staff at the school were amazing throughout this entire past year while we experimented with different ways to educate and socialize Javan. But in the end we found that he is just not able to tolerate being at a school and homebound schooling was not a good fit for us. After all, if we can’t meet the goal of getting him in the classroom around other kids his age, a goal far more important than mere academics, what’s the point? It’s better for us to return to homeschooling, where I can fully tailor each area of learning for where he is at that exact moment.  I can take his current interests into account and build his work around those interests. I can modify school hours based on whether or not he slept last night. I can school in the afternoon if it’s going to be rainy so that we can enjoy the nice weather in the morning. The flexibility and individualization of homeschooling benefit us both. Thus, we happily reopen the doors of Dragon Heart Academy. To celebrate, I created a school logo for us:

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We homeschooled Wednesday, Thursday, and Friday this week. We’ll be tweaking learning material and schedule daily for a while until we get it right for now. We do about an hour or an hour and an half of school each day and I make sure minimal writing is involved as Javan’s dysgraphia is his current cause of major school frustration. To offset his distaste for writing, he’s learning to type using Google Typing Club, which he’s actually very much enjoying. I require him to complete only one short level every other school day, but he enjoyed it so much that Wednesday he chose to complete four levels, repeating several of those levels multiple times.

Thursday, the beauty of homeschooling shone abundantly clear as Javan experienced a moment of pure magic. We were on our way home from park day and had stopped by Daddy’s work to bring him a surprise Sonic strawberry limeade. His office shares a parking lot with our little local airport and as we got out of the car to bring Dad his drink, we heard a loud jet and looked up to see it turning above us. One of Javan’s cartoon shows early this week mentioned something about a sonic boom, and he was curious to learn about that so we watched a few YouTube videos about sonic booms, the speed of sound, and the Doppler effect. He was so excited to have heard that loud jet, but we weren’t sure if what we’d heard was a sonic boom or not.

After delivering the drink, we decided to walk over to the airport and see what planes might be out back. We walked around the far side of the airport and lo and behold, there sat parked the very jet we’d just seen and heard! One of the techs fueling the jet noticed us standing outside the fence watching and he waved us to come in and get a closer look! We saw the fueling station with its huge, fat hose and the gas meter which had already climbed past 500 gallons. Javan got to meet the pilot, sure to be remembered as a True Hero of his childhood, and walk around and even touch the jet. And, no, he said what we’d heard was not in fact a sonic boom. The pilot offered to let him climb the ladder and check out the cockpit, but Javan inherited my unfortunate fear of heights to such a degree that I couldn’t pay him to climb that ladder. Literally. I offered him five bucks and received a hard “no” on the ladder climb.

Luckily, he was able to momentarily conquer his phobia of having his picture taken and shared, as I explained to him that this was a special once in a lifetime moment that he’d always treasure. He anxiously awaits having the following photo framed and hung on his bedroom wall:

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Here’s a closer look at the joy on my precious boy’s face:

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The whole walk back to the car he kept repeating, “This is the best day of my life!”

I know that homeschooling won’t always be magical. It won’t always be joyful. But it’s moments like this that make it worth it.

Progress

What’s it like homeschooling and raising a special needs child? Well, you fight harder and longer for progress – academic progress as well as social, emotional, behavioral, and even physical. And you celebrate more fully and deliberately each and every step in the right direction. You try not to become distraught when your child can’t seem to get the hang of things that kids half his age don’t struggle with anymore. You try to remember that they probably WILL eventually get it, and in the end, when they reach adulthood it really won’t matter when they mastered certain skills, only that they mastered them. For instance, we made huge progress this week, when for the first time my eight year old actually touched shampoo that I had massaged into his hair. Has he mastered the skill of washing his own hair? No. Have other eight year olds mastered that skill? Probably. Do I have to care? No. Because he’s making progress in the right direction, so it makes sense that he will continue to progress until the skill is mastered. When he is an independent adult, it will only matter that he knows how to wash his own hair; it won’t matter that he learned how after he was “supposed to.”

Academic skills that are behind are somewhat harder for me to accept. I want every skill to be “on grade level” and I can become anxious when they’re not. But I have to force myself to step back and remember that academic skills are really no different than life skills; he WILL get it in time. Right now, the skill we’re struggling with the most is rapid recall of addition and subtraction facts. That skill is just…missing. He counts everything on his fingers, which doesn’t really work well with end-of-second grade math problems. It just flat out takes too long. We look for extra ways to practice. He has to put in more time and effort than other kids to learn those basic skills. But I need to relax. He will get it! And in the end, I won’t care that he didn’t get it “on time.” I will only care that he has the skills he needs to be functional, independent (whatever that looks like for him), and successful.

This week took an extra toll on me. We added lots of new social activity. But THAT IS PROGRESS! The fact that I can add extra social activity, and have a reasonably fair expectation that he can be successful with it is progress! The fact that it was really, really difficult to do is just our reality. I want to share our progress with you, so I’ll walk you through our week. The good and the bad, because I’m a realist. So this is what a typical homeschool week looks like for us. Well, almost typical; Monday was a holiday.

Tuesday, we started school early with the intention of visiting a park with a new homeschool group in the afternoon. Not only did we speed through school with no behavioral problems, but Javan also achieved a new feat. He read for 15 minutes straight, and with some of the most difficult reading he’s done to date. Although it was a second read-through, it is a HUGE accomplishement that he read 15 of the pages in THIS book:

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He has never read for that long in his life! Yes, we celebrated! After that, we went to the new park with the new homeschool group. New is not easy. He fought and didn’t want to go at all. Finally, he consented (with a poor attitude) and once he got there, he did great! It was a small group. There were lots and lots of sidewalks within viewing distance for him to ride his bike on. He even talked with the other kids! He introduced himself to everyone as a 22 year old Jedi, but he introduced himself and had normal conversations. I mean, he did fantastic! We knew it was time to leave when a massive thunderstorm appeared and let loose on us, but much to my dismay he would not contemplate leaving until he had ridden his bike to each of the four sections of the park to warn everyone in his best Jedi voice to “Leave the area immediately. There is a thunderstorm.” We were both soaked, but at least his intentions were good. A note of warning: there is always a trade off for things going well. By the time we got home, his behavior had deteriorated to the point that I sent him to his room for a good long while. He then destroyed his room by pushing over his dresser, his chair, and throwing stuffed animals everywhere. Yes, he had to clean it up after he calmed down.

Wednesday, he had a tummy ache and back ache. It was terribly difficult to convince him that he still needed to do his schoolwork. He took an early nap. We got through our work for the day, but it was extra challenging. That afternoon, we went to a new program at the library. Boy, oh, boy is new hard. He fought tooth and nail not to have to go. But again, once I forced him and we got there, he did wonderfully. The librarian read them a funny book that he loved, and then all the kids got to make ice cream sundaes.

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Javan enjoying his ice cream at the library.

You may notice in the picture above that Javan is wearing gloves to the library. Gloves, and any extra clothing, is a defense mechanism against anxiety and fear of sensory overload. It’s extra protection.

Thursday, our regular homeschool group had our Not-Back-to-School party. Javan rode his bike around the circle over and over and over, as is his usual park day activity. He also, however, shared his bike with his friend Lorelei. He shared his bike. That is always a big, big deal. AND, he participated shortly in the bubble activity we brought.

Javan making a bubble snake!

Javan making a bubble snake!

And since this is a park day we attend weekly, and thus is not a new experience, I didn’t even have to pay for the success later! Score!

Today, Friday, was a biggie. This morning, Javan attended his first homeschool class. You know, like, with other kids, and not at our house, and not taught by ME. He was a huge mess of anxiety. He was adamant that he would not go. And that if we did go, he would do everything he could to get kicked out. I’m sure by now, you’ve noticed a pattern of him refusing to participate in things, me making him participateanyway, and then him doing fine. So with that pattern in mind, I charged through and made him go. It was a nightmare to get him there. He wouldn’t dress properly. He ended up going in two shirts, gloves,and pajama pants (It’s 95 degrees here. In the shade.). The only way I could get him to consent to go, was to remind him that since the class is only one day every two weeks, he’d only have to go to two classes and then he’d get to bring Rosco with him on the third class! This seemed to ease his anxiety considerably and I got him into the car. About halfway there, the anxiety shot through him like visible electricity. He was furious. He wanted me to “turn the car around this minute!” I used a soothing voice and kept my calm trying to reassure him. We got there, he through a few projectiles at me, and refused to get out of the car. So I just stood there in the parking lot watching all the other moms and kids happily march their way to the door and disappear into the blissfully air conditioned building. He finally got hot and decided to go in.

We sat in a corner and decided to just watch what the other kids were doing instead of having the pressure of participating. The kids all introduced themselves, and he introduced himself as “Javan Kratt” one of the Wild Kratt brothers. But he did introduce himself! Then the other kids moved over to tables, and were instructed to team up and build a 10″ tower out of note cards that would support an astronaut statue (which was really a stuffed turtle). It’s an engineering class, by the way. Javan rolled around semi-wildly on the floor while the other kids listened intently and began building. I sat on the floor trying to calm his activity. Although he wasn’t being loud, he was distracting the other children and I continually redirected their stares back to their work or their teacher. Eventually, I was able to interest him in seeing what they were doing. And then, amazingly, he decided he would build his OWN tower. To “show them how it was done.” He did it! He sat at a table with other kids and did work!

Javan cutting and fitting together his note cards.

Javan cutting and fitting together note cards to build his tower.

Javan and his fantastic teacher, Mrs. Jessica, seeing if his tower would support the NASA Turtle.

Javan and his fantastic teacher, Mrs. Jessica, seeing if his tower would support the NASA Turtle.

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Javan’s tower holding the turtle!

Javan’s tower also seconds as a turtle catapult, which the other kids thought was brilliant and gave him much praise for. After this activity, everyone drew a heart in their notebooks and wrote or drew the things that they love inside. Here is Javan’s picture. Inside his circle (because hearts are difficult) is Mom, Dad, and his friend Lorelei. He has a best friend that he loves! My heart is soaring for him! Oh, and there’s also Lorelei’s cat, PeeBee, which she added for him. And possibly a picture of grammy he added when he got home.

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And here’s him hugging Lorelei in class.

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I count that as a success! After class, I asked him how he liked it and he said it was awesome. Then he realized the implications of what he had said and that he might have to come to another class with unknown activities in the future if I thought he liked it, and now he insists that he hated it and it was awful. We then had a play lunch at McDonalds with Lorelei and her mom, which happens to be my best friend in the world.

After only a two hour break, we headed back out for a birthday party at a splash pad. It was a stretch, but we did it. A year ago, we were still sticking to our strict “one activity a day” policy no matter what, and now look at us! A class, lunch, and a birthday party in the same day! Well, once again, I could not for the life of me convince him to dress appropriately, so he arrived at the splash pad decked out in…two shirts, gloves, and pajama pants…and rainboots! Awesome. He was a bit more aggressive than I would have liked and I had to keep eagle eyes on him at all times, which gets absolutely exhausting. There was one embarrassing moment during snack, when all the adults were chatting away with each other and all of a sudden from the kids table there comes a shrieking growl-scream. Everyone ceases talking at once and stares at my child, from whom the sound is emerging, on top of the snack table in all the other kids’ faces. Well, I pulled him out and we had a good talk and I went back to pretending to be normal. We were barely able to make it through cake and presents and then we were outta there. But, guys, he DID IT.

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And that, my friends, is the sum total of a successful homeschool week with a special needs kid. I mean, of course, that I left out tons of details of all the schoolwork and all the feeding and cleaning and feeding and feeding. And feeding. It is perfectly exhausting. But when I think of how far we’ve come, it is worth it.

Why Do I Even Try?

I ask myself that question after every failure. And recently, failures abound. Javan is highly unstable in his bipolar mania right now. He is just super intense and impossible to “handle,” impossible to control. He is MORE of everything than is usual, even for him. He is more impulsive, more fidgety, more sensory overstimulated, more defiant.

Let me tell you a little joke: Yesterday, I took my son to a Renaissance Faire by myself. Hilarious, right?!? We met with our homeschool group, who is composed of the most loving, caring, care free, accepting parents in the universe. I know, I know, I just said I went by myself, but you know what I mean. I was the only one responsible for keeping his behavior acceptable and keeping him safe.

I was responsible for keeping hims OUTSIDE the castle “gates,” which was really just an open archway, until the show began. Did I mention he is impulsive?

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Waiting Outside the Castle Gates

I was responsible for keeping him and others safe. Which made the situation in the next picture a bit of a doozy.

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Swordfight!

You see, just the day before, at our homeschool park day, these very same swords were brought out. Javan had asked to try one, and promptly whacked the kid who gave it to him a nice smack on the shoulder. When I wrenched the sword away from him to give it back to the kid apologetically, I was amazed at the weight of it! Those things can deal some damage! He had seen the sword-wielder engaging in pretend play with a friend and he thought the kid wanted to hurt his friend. So he hit him. The sword-wielder, being the sweet tempered, mature thing that he is said to Javan, “He’s my friend too. I wouldn’t hurt him.”

So, outside the Renaissance Faire gates, when Javan wanted to borrow the sword a second time, I held my breath and prepared to lunge should the slightest scowl cross his features. But he engaged in pretend play like a champion! Second chances are important.

I was responsible for keeping him in “the group” instead of in “the performers.” Oh, wait…oops.

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Engaged in Conversation with Friar Blllllullllullll

First fail, and we’re not even inside yet! Oh, well. This doesn’t really count as a fail at all since the sweet Friar went right along with Javan’s shenanigans as he was welcoming all to the castle. He introduced himself as Friar Blllllullllullll (the sound you make when you shake your head back and forth and your cheeks flop around). He said he already knew Javan’s name: “Mr. Minecraft,” since he had the word Minecraft on his shirt. And Javan didn’t even get mad at him for being wrong! This is kind of a big deal, since he doesn’t like nicknames or incorrectness in any form. Javan simply, kindly, and with a smile corrected the Friar.

I was also responsible for keeping those impulsive little hands out of the actors’ knapsacks and sporrans – a feat which kept me on my toes to say the least. He didn’t seem able to just ask about an item. He seemed compelled to touch and inspect every item with his own hands, with no regard to the object’s personal or impersonal nature. Have I mentioned impulsivity?

Aaaaand, here’s a nice example of when I failed to keep him as part of “the group” instead of part of “the performers.”

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The Juggler

In the above photo, the juggler is standing on an audience bench gathering said audience, so it’s only fair that once he was back on stage a member of the audience should grace his stage, right? Can you guess yet who the audience member might be? Ding, ding ding! Look behind the juggler and to the left. You’ll see a large, resounding bell on the stage post. The juggler did amazingly well as Javan ran up onto the platform, uninvited, and rang the bell with all his might until I could reach him. I’m uncoordinated, to put it mildly, so anyone who can simultaneously juggle, engage an audience, ignore a pealing bell in their ears, make direct eye contact with an apologizing mother, and reply in kindness is an exotic species to me.

In between shows, there was plenty of time to mill around doing nothing. Or everything. Depending on who you are. You could run relentlessly ahead of your mom, dart through shops, touch absolutely everything and everyone, and throw terrible, ugly, embarrassing tantrums when you don’t get to buy everything they sell and half the things they don’t. You could get your mother unsolicited parenting help from elderly shopkeepers who want to teach you a thing or two about how to respect a mother-or-any-woman-for-that-matter, or tips from caring shoppers or show-goers on how to control behavior by pinching that nerve between the neck and shoulder because that worked for their kids.

But, didn’t I know it was time to leave? Shouldn’t I have just taken him home and relieved everyone: him, me, everyone? Well, yes. Except that we drove an hour each way to see the jousting, and the jousting didn’t begin until promptly noon…and hour and a half after it was “time to go.” So, alas, we endured. This helped a little:

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The Pillory – Bwahahahahaha

As did this:

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Way, Way Too much Time Spent Lavishing Attentions on the Beautiful Queen

This didn’t:

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Spending $1 to Attempt to Climb a Rope Ladder for 1.5 Seconds

And, Finally!!! The Joust!!!

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His behavior was so, so not okay during this. I had pushed him too far staying for so much longer than he needed to stay. But he got the experience. We had to leave before he could be duly knighted, but by George he saw the joust. Most of it anyway. The highlight of the joust? When Sir Caleb introduced himself to the crowd and declared that he fought for honor and then Javan’s voice came loudly through the silence of the onlookers, “I fight for honor, too!” Caleb found him in the crowd and threw him a thumbs up.

See, Javan engages with experiences at a different level of intensity than “we” do. He didn’t sit quietly and recognize himself as an onlooker. He was one of “them.” He was a knight, a jouster, a juggler, a magician, a puppeteer, a gentlemen of the court. If you experienced everything that intensely, might your behavior be off just a little too?

So, to answer my previous question, why do I even try? I left that faire feeling embarrassed, worn out, frustrated, like crying. Javan probably felt the same things. Why put us both through that? Because, this:

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First Face Painting

This picture was taken today, the very day after experiencing the Ren Faire. Those feelings from yesterday were not suddenly and miraculously gone from me. I knew I could very well be putting myself in the same situation when I took Javan to a free kids art festival today. But what happened was what you see above: my son got his face painted for the very first time today! I asked him “Do you want to get your face painted?” just like I have every time we’ve passed a face painting booth for the last 5+ years. Only this time, he said, “Yeah.” Like it was no big deal. Like it was nothing out of the ordinary and he’d done it a thousand times. By the time his turn rolled around, he was slightly nervous and gave the artist instructions on where she could and couldn’t paint. The brush had to be tested on his hand first to make sure it wasn’t sharp. She put on the first dab of paint, and I held my breath. And then I saw his face break into the proudest, most gleeful smile and I heard his giggles as he realized he was doing it! He was getting his face painted. A childhood right of passage had been achieved and he knew it!

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Chico the Cheetah

That’s the story of how Javan became Chico the Cheetah. “Chic” like butt cheeks, Javan would say.

And that’s the story of why I try.

Don’t Give Up

Man, oh man, how I want to. Give. UP. When every trip to town or attempt at socialization is a slap of failure in the face. When I’m embarrassed to let anyone see how very not in control of my child I am. When it’s a guarantee that if we leave our cave-home, we are setting our son up for a meltdown. I just want to quit. To stay home where it’s safe. Where there’s no one to judge us save ourselves.

Why would we continue to keep attempting socialization opportunities when we know he’s NOT going to socialize. Why keep paying for field trips with our homeschool group or Cub Scouts when we know we’re throwing money and evenings down the drain? Because, this:

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and this:

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and THIS

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I stood whisper-yelling at my husband in the bathroom last night to just LET US QUIT. Javan hates Cub Scouts. Every time we go to a meeting, it’s hard on all of us, he doesn’t participate, and we end up humiliated and reeking of failure. But at my husband’s stubborn insistence, we went on a Cub Scout field trip to Callie’s Acres last night anyway. Even though Javan had been screaming his unwillingness to go for hours. Even though for the life of me I could not wrangle him out of his pajamas and into his blue jeans.

So, we grabbed him kicking and screaming from his room and got him dressed. It was a team effort. And he still had his pj’s on underneath. We marched him fuming to the car. We got him there and he refused to put on the field trip t-shirt that all the other kids were wearing or participate in group photos. No big. We didn’t need to fight those fights and we didn’t.

My son’s Daddy was the only parent on the hay ride. I was so proud of both of them. They were surrounded by kids singing Old McDonald at the top of their lungs and they did splendidly. Then Javan was afraid of the ducks. Didn’t want to go near them. But Daddy took him over on his shoulders until he couldn’t handle the curiosity anymore and he climbed down and joined the other kids in giggling when the ducks nibbled their fingers. He climbed on the playground with other kids. He did GREAT!

I am on cloud 9 talking about that. And at the same time on cloud 0. Because there is a price for success. To quote one of my favorite TV shows, Once Upon a Time, “Magic always comes with a price.” Well, our evening magic’s price came due this morning. Anytime after we experience a triumph like we did last night, we pay. Javan has been in time out so much this morning. He’s probably spent more time in there than out today, which is why I am afforded the opportunity to blog in the middle of the day. I can’t get him to do his schoolwork, or obey, or be respectful. And it sucks and I hate it. But IT WAS WORTH IT.

So parents of challenging children, children with challenges, however you want to say it. Stay strong. Keep each other strong. Because your partner will want to quit sometimes. We all do. But you can’t let them. We have to take turns not letting each other quit. And grandparents, aunts, uncles, friends, when a time comes when we both quit, pull us back up. Don’t let our families, the families of children with autism, bipolar, and other challenging struggles live our lives in caves.

I recently expressed to one of my best friends in the world how sorry I was that we are always so unpredictable, unreliable. How much I hate that when we try to get together and do something that it so often ends in disaster and our something is ruined. She told me not to worry about it, because “You’re worth it. You’re always worth it.” Those words are the ones we need from you. Say them. It matters.

My Big Second Grade Boy

My little boy is a big second grader. Finishing first grade was a struggle. I am so proud of him, and of myself, for pushing on through. I think he’s really enjoying thinking of himself as a second grader. He seems so confident in his abilities.

We ran by the library this afternoon to sign up for the summer reading program and we came home with a Batman book,  two Bob the Builder books,  and a Bad Kitty book. Well, who can go into the library and escape empty-handed? We really wanted to rent this one specific Bob the Builder book that has the audio CD with it, but they (*gasp*) didn’t have it! This book is very special to Javan as he has rented it many, many times over the years and he just looooooves audio books. Ms. Anne, one of our amazing children’s librarians who knows Javan and has watched him grow up, wanted so badly to help him find a good one. She found one of her favorite children’s books with audio and suggested it to Javan. I was so proud of his reaction. Although it was obvious that he was disappointed in not getting the book he wanted, and although he did not want the book that was being suggested to him, he was so polite. He simply said, “No, thank you. But I appreciate the offer.” My grown-up boy made his mama glow with pride.

Then, on the way home, two more big boy moments happened. I was explaining how the reading program works and prizes and all that stuff, and he said, “So I’ll read one of my readers every day!” He knows very well that being read to counts perfectly well at this age, but he offered up reading to me anyway. This is HUGE, ya’ll. AND…I heard him flipping through his Batman book trying to sound out all the “Bam” and “KaPow” sound words! He’s beginning to think of himself as a reader!

I’m so glad there are kind, loving, caring people in the world like Ms. Anne, who want to help children overcome disappointments and grow in character and learning. And then, of course, I am reminded that there is a flip-side of every coin. I’m already irritated at the number of people, adults, mind you, who feel the need to conversationally criticize my child for what they call “staring.” I know they mention it to him because it makes them uncomfortable, but still, he is becoming quite a good communicator (see above response to librarian) and I wish  people could just see that and not nit pick every little thing. He’s not staring. He’s making more eye contact than you deem appropriate, or more likely, he has paused and gone inside of himself to internalize the communication that has just transpired and he will rejoin you in a moment. In any case, here’s what I’d like anyone who is listening to take away from this little rant: If someone you are talking to or just find yourself near for whatever reason seems a little off in whatever way, don’t criticize or judge them. Smile at them and show acceptance. They don’t want to be “off,” they want to be normal. Adult, child, it does not matter. We all crave acceptance. Why not give it?

So, as I said, I’m already irritated by this when I go into the auto parts store to get a wheel bearing for my husband’s bike. We’re standing at the counter when an elderly woman who works there comes up to the counter and smacks it…twice…practically shouting at Javan, “Hey! Hey! Why you frownin’?” I guess this was her way of being friendly? Maybe she gets a happy response from typical children? I wouldn’t think so, but maybe. Well, he just “stares” at her, well real staring this time, and has absolutely no idea what he’s supposed to say. I try to let him answer for himself, but knew he was lost this time, so I prompted him…”Javan, were you frowning?” At least that would give him some sort of answer? He just shook his head no, dropped to the floor, and crawled away to a corner. She replied, “Rudie!” I was dumbfounded. She just called a six year old a name. He was being rude? I said, “My son is not rude. He’s autistic.” Looking back I should have said, “He isn’t rude. You scared him.” Because, although the speechlessness and crawling to a corner behaviors are what I consider autistic responses, the issue here was not his behavior but hers. Hindsight’s always 20/20 I guess. Of course after I told her that, she was apologetic and friendly, like with actual friendliness this time, and he was fine. I’m choosing to see progress in this situation. Javan did not scream, cry, hit or throw anything at the woman…a short time ago he would have. I didn’t hit her either. So there’s that.

And I don’t know where that leaves my message. Because, really, I can’t ask everyone to go around communicating with people as if everyone the meet might be autistic. I can’t ask people to change the way they interact with others just in case one of them is autistic, or special needs, or just sensitive. Or can I?

Three Months of Random Ramblings

November

I found these garbled notes I had written way back in November, and didn’t want to throw them out…so here they are. I think I’ll follow it with mangled lists of things that have happened since…

A few brief examples of the high and low extremes our lives contain day to day, that might provide you with some insight as to why I’ve seemed muddled and confused as of late. I can’t seem to form coherent thoughts from my life, so here are some incoherent ones.

– My son creates his own reality, whereby he accuses a random teenage boy of stealing and sets out to beat him up.

-My family receives a compliment that our son seems like a perfectly normal kid and we work together well as parents.

-My son inserts the water hose into the living room, wedging its nozzle just inside the glass door so as to go unnoticed. I see and remove it just seconds before he turns the water on. He was trying to clean the house. He feels he would have deserved bonus points if the house had filled up with water.

– I feel that my son is getting behind in reading and math, to the degree that I don’t know whether to just do the first half of first grade again after Christmas or move on.

-On the other hand, it’s November, and he just finished first grade science and is eager to begin second grade science next week.

– I am hit with a heavy object flung across the room at me for the umpteenth time this week. The trigger: I was on the phone.

– My son bakes cookies in his play kitchen. So sweet. Until I realize that one of them is poisoned and is destined for the bad guy from Wild Kratts.

– We have Thanksgiving at our house and he does so surprisingly WONDERFUL! Even shared his playroom nicely (except for that once) with other children!

– I have no idea why the tv or xbox won’t turn on. Last week he disconnected the cable from the other room so all we got was static. This week, the power buttons don’t work. Hurry home, Honey.

– Javan finally learns to swing HIMSELF! It is so amazing watching all the bits and pieces of body movement come together in some form of coordination. I tear up.

December-January

-I get fed up with homeschooling through the computer and begin Christmas break early. Two weeks early.

– The Sandy Hook shootings happen and I hate myself for thinking of my son more like the shooter than the children hiding in their lockers.

-The world does not end.

-Christmas break is spectacular! He seems happier and more focused and, well, less annoying.

-My brother, sis-in-law, and their 5 month old baby girl, Addison, visit and Javan is a sweetheart. Relief. He loves his baby cousin so much that he will even share his Grammy with her. That’s saying a lot.

– My husband’s brother and his wife and four children visit, and Javan is still a sweetheart. He does so well with his cousins it always knocks the breath out of me. How can he be so sweet and loving and happy and communicative and present with them and not with other kids?

-On Christmas Day, he is so excited about giving us the gifts he wrapped for us that he absolutely refuses to touch his own gifts before giving us our own.

– We start school back up. I abandon the computer schooling because it just stopped working. Why, I don’t know. But it did. I am so afraid of his reaction to “paper school” because he reacted SO negatively to it in August that I tucked it away. Until now. He knocks my socks off. He does AMAZING! Not just the first day, either. I’m talking two straight weeks of wonderful school days. Yes we backed the curriculum up nearly to the beginning of the school year, but we’re doing two days at a time and most importantly he’s GETTING it and he’s actually feeling successful!

-He scares the bajeezers out of his Dad and I in Wal-Mart, when he insists that our cart is on fire…the one he was supposed to be sitting in. Because we still have to sit him in one or he’ll be all over the place. It’s kind of awesome. Only not. Anyways, so yeah, we were all like, “Whatever, Javan. You just don’t want to sit in the cart like we told you to” and we put him in the cart. He screams bloody murder, “OW! OW, IT’S BURNING ME! IT’S BURNING MY BARE BOTTOM!” And tears streaming all down his face. He isn’t acting. I pull him out of the cart and hold him to me and just look over his shoulder at my husband. Our eyes meet and we are instantly both more terrified that we weren’t the only one who thought that was real. We had planned on shopping the clearance aisle, a favorite spot of ours just after Christmas. Javan was so excited about that! I was pretty sure I didn’t care any more. I just wanted to get out of there fast. He couldn’t understand why, WHY couldn’t we shop for clearance toys? I finally snapped and said, “Because you can’t tell if you’re on fire or not, and Mommy’s not okay with that.” Oh, how I wish I hadn’t said that. From that moment on, it was just “pretend.” He didn’t really see or feel fire. He just made it up.

-Javan receives a gift of a DIY robot kit where you use things from around the house and make them into robots. He becomes obsessed with robots. I’m thinking this is something we can use. Something we can build on to give him a foundation of knowledge that he will most likely need in the future. If that future is one in robotics, fantastic. If this is just a phase, still fantastic. He’ll be learning about electronics and computers and you know that information will come in handy in twenty years.

-Not only does Javan become more and more involved in his own created worlds based on whatever cartoon or movie he’s seen recently, especially if one of the characters is a beautiful girl, but he becomes obsessed and constantly, constantly insistent that he have a costume. Whatever costume he thinks he needs that day is absolutely the most imperative item on our to-do list. If I hear another word about costumes I will combust. Not spontaneously, either. No, I have actual plans to combust the very next time I hear a whiny plea for a costume that is impossible to make first thing in the morning before I’ve emptied my bladder, even!

-It is next to impossible to gain Javan’s attention long enough to teach him anything in school. I’m trying so, so hard to get him to look at the word on the page. Look at the word. Look at the word, Javan. Look at the word. What am I pointing at? Javan. Javan. LOOK AT THE FREAKING WORD! Wow, yep, I really yelled that loudly at him. He then quotes the Proverb we’ve been learning. Proverbs 29:11 “A fool gives full vent to his anger, but a wise man keeps himself under control.” Still with raised voice I say, “I know! But you’re frustrating me so badly because you will not look at this word. You’re making me be FOOLISH!” He looked at me with such sweetness and said, “You’re not a fool, Mom.” Then he quietly walked to the table, sat down, and read the word. Well, don’t I feel like dirt? Some days I just don’t know who or what I am. I just get through it the best I can.

-We have an appointment with the psychiatrist. I am so nervous because of the Walmart hallucination. We’ve talked about possible schizophrenia and I’m afraid I will hear something like, “Well, that confirms it. Childhood schizophrenia. I’m afraid it only gets worse from here.” I feel so, so, SO much better after leaving the office. The doctor is indeed perplexed by my son and by the hallucination/pretend fire, but he doesn’t lose hope. And he doesn’t say the word schizophrenia once. He says Javan could have really believed the cart was on fire. He could also have seen a static spark off  part of the cart. Those things really do shock a lot. Or a bright light glinting off of it a certain way. Well, I hadn’t thought of that possibility.

He ALSO points out some really positive changes he sees in Javan. Javan has been seeing him for a year and a half, two years, somewhere in there, and he said this is the FIRST time he has felt that Javan was interacting with and connecting with him as a human being. He said he usually feels like Javan treats him sort of like a piece of furniture in the room, which I can see…he’s usually up in his space, under the desk messing with his feet or legs or picking through the trash can under there or messing with the desk drawers. This time the doctor said Javan seemed really present.  Being present in reality has become a real big issue for us.

He did, however, also notice Javan’s EXTREME hyperactivity. The child never stops moving. Never stops talkingEven when he runs out of words, he just makes sounds and sounds and sounds, ugh. And he also noticed and shared our concerns over Javan’s rapid weight gain since we upped his Risperdahl. I did a BMI calculation and it said he was “obese.” Psshhh, I don’t really think he’s obese, but we can see the belly becoming more pronounced. At this point the doctor drops his head into his hands folded on the desk, and says, “You are really, really not going to like what I have to say now.” Um, yipes? “I think we should try him on stimulants again. It’s been over a year since we’ve tried one. It would slow him down and also curb his appetite so he could maintain the positive effects of the Risperdahl while contradicting the negatives.” He’s right. Man, I didn’t want to hear that. Because stimulant ADD medicines, in past trials, have made my son aaaaannnnggggrrrrryyyy and mean…sort of like the Hulk. Only slightly less incredible. So, yeah, the hubs is out of town for a few days. We’ll do the stimulant trial after he returns. Dear God, save us all.

-For the first time, I am actually proud that my son lied to me. He lies all the freakin’ time, but usually I, you know, don’t like it and stuff. My child sits down to dinner tonight and declars it delicious, even eats several hearty bites of it before announcing himself full and asking to be excused. Later, when he is again hungry, I offer him his dinner plate once more, and he says he didn’t really like it. I am perplexed. He then tells me that he was just tricking me…he sort of looks worried that this was a naughty thing to do, until I say, “You mean, you were just trying to be polite?” Yep, that’s the one! He was trying to be polite! He thought of someone else before himself!

-All in all, I’d say the big picture is looking good. He’s not doing as well right now as he was during the blessed month of December. He’s so terribly unfocused and difficult to teach or even talk to. Because saying a sentence requires him to be undistracted for seven seconds. It also requires him to be quiet for that long. Sheesh! But I remind myself that those are SMALL picture annoyances. The small picture right now is frustrating. The big picture looks bright. I’d say that’s a good trade-off.

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