Not-Even-Humble Bragging

Wow, guys, it has been an INCREDIBLE three months since my last update. Maybe the best we’ve ever had. 

When I left off, Javan’s schizophrenic symptoms were cresting, and we started him on the medication Seroquel. After three days of him being on that stuff, I called the doctor and said, “Help! This isn’t working! It’s making things so much worse!” To which the doctor responded, “Try giving him half a dose in the mornings in addition to what he’s already taking at night. If it gets worse, we’ll try something new.” Y’all, this right here is why it’s important to find a doctor you trust. If it had been a different doctor, I would have been all like, “Did you not hear me say it got worse? And you want me to give him more? Nah. Bye, Felicia.” But, this guy, this doctor has stuck with us through thick and thin and he knows his stuff and he knows my child. So we tried it. 

We could tell immediately that we’d found a for-now-magic-bullet. Javan is peaceful. He’s Happy. He’s himself. We’ve been doing an online school curriculum, since my traditional approach just wasn’t holding his attention, and he’s doing absolutely fabulously with it. I sit right with him and guide him through the activities and read the text aloud to him. And he just… complies. I say, “Its time for school and chores. Which do you want to do first today?” And nine times out of ten he says, “school,” sits down, grabs the mouse, and gets started without another word.  And say, seven times out of ten he does it with a good attitude. But it always gets done. And then most of the time when it’s time to move to chores, I find that he’s already made his bed the second he woke up. Who is this kid? 

He’s Javan, that’s who. The real Javan. The one he always wants to be. I hope he always remembers this is the real him. That when his behaviors are beyond his control, they aren’t what defines him. I hope I’m showing him that. 

He’s no longer afraid of baby germs, although he still prefers to avoid company of the youngish variety. Last week, I meet a new mom who joined our homeschool group at McDonalds, along with her precious two year old son and husband (and his service dog! Exiting!). Javan wasn’t in the best mood about being there, but his face never morphed from unhappy to mean or unfriendly, even toward the babies that climbed past him on the playground. They climbed past him,  y’all. And it was fine

Javan sat at his own table with his back to me and my new friends, shoulders hunched, refusing to take any part in this social nonsense. Until, Sam, the husband-dad-person with the service dog somehow engaged him in conversation while I was talking to the other mom. They talked pretty animatedly for quite some time about I don’t know what, but it doesn’t matter. When we left, Javan told me Sam was his friend. Those of you who’ve been following our story for a while know that Javan does not have nor want friends, and never uses the word friend in relation to himself. Ever. But this guy made it so far up the friends list that Javan even said he’d enjoy going to their home one day (we were invited) even with a two year old there. What? This is good stuff I tell ya. I really gotta follow through with this friendship thing before its forgotten. 

I’m not even done bragging yet, so grab some popcorn and buckle up. Just kidding, just kidding, I’m really trying to consolidate here. Guys, Javan had to have two adult molars pulled yesterday due to overcrowding. Basically there wasn’t going to be enough room for his canines to come in, so they would be forced to erupt way high up on his gum line above his other teeth. Since Javan is definitely not going to handle getting braces, pulling teeth was really the only option. I’ve been stressing about yesterday for over a month. We prepared him repeatedly, but of course were meet with negative responses. I mean, I like my teeth too, kid. I get it.

The dentist’s office was unable to put him under anesthesia, so he was awake during the whole nasty process. We were able to give him an Ativan prior to the procedure, which actually helped a ton, but he was by no means sedated. He was highly aware of everything that was happening. We brought his favorite “couch blanket” and covered him up, tucking and in nice and tight. And we brought Rosco, who just laid on the floor the whole time since the chair was pretty small (my kid isn’t exactly ‘pediatric dentist chair size’), but just knowing his best bud was there gave Javan comfort. Javan knocked the dentist’s hand out of the way only once, more out of reflex than opposition, and he immediately apologized. He really gave his all to do his best. And honestly I think he did way better than I would’ve. He didn’t even cry! The dentist was as amazed as we were at Javan’s complete cooperation and was like, “Whoa, maybe I outta start using Ativan in my practice more often!”

OK, OK, almost done bragging. I gotta slip in just one more brag and I ain’t even sorry. Javan went to Aldi grocery store with me today, the Saturday before Father’s Day. Not my best planning, I’ll admit. Crowded is an understatement. He wanted to push the cart and have me walk Rosco. He pushed the cart the entire time, and my list wasn’t small. I only had to remind him very few times not to crowd others with the cart. We were separated once, albeit barely, when I walked forward and another shopper pushed his cart between us. Javan did not react. He just waited until he could push up next to me again. Another shopper offered to pay a million and ten bucks for Rosco. Javan just said no. He didn’t act threatened or offended like he might have in the past. Due to the crowd, Javan realized (on his own, mind you) that he was in the way of a woman wanting to buy eggs. He opened the freezer door, grabbed a carton of eggs, and handed them to her like a perfect gentleman. Did I mention that this woman did not speak a word of English? Afterwards,  when I commended him on the interaction, he told me that he didn’t even realize until later that she hadn’t spoken English, he just understood by what her body did. He read her body language. Amazing!

Whew, that was fun! Thanks for enduring all my mom bragging. I’m so very proud of this kid. He accomplishes so many things that I wasn’t sure he ever would. Always, always on his own timeline. I’m learning to allow room in my expectations of the future for him to continue doing just that.

Advertisements

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:

20170307_161730.jpg

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:

20170306_133050.jpg

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:

20170306_153212.jpg

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.

photostudio_1488929893901.jpg

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:

sketch-1488308614180

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:

20170302_145256-1.jpg

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

20170304_210029.jpg

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:

blog reading

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.

IMG_20140903_163044

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.

Javan's tower

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.

blog drawing

And here’s him hugging Lorelei in class.

blog hug

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.

blog splash pad

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?

Image

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.

Image

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.

Image

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.”

Image

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:

Image

The Pillory – Bwahahahahaha

As did this:

Image

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

This didn’t:

Image

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

And, Finally!!! The Joust!!!

ImageImage

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:

Image

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!

Image

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:

1390476_10202174293340220_570166601_n

and this:

1393345_10202174298380346_73183579_n

and THIS

1390778_10202174299340370_385736336_n

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?

Previous Older Entries

%d bloggers like this: