Friday, May 19, 2017

The Final Frontier

I'm waiting for the phone to ring; I fully expect that it will within the next hour. Why? Because Ben is on an overnight (I use that term loosely) Space Camp mission that began an hour-and-a-half ago and is supposed to run all night, and all day tomorrow, while the Space Camp folks rehearse the week-long missions they will run this summer. Ben, who is an avid participant in his school's "Astro Knight" program (i.e. Space Camp), is supposed to be flying this mission with all his classmates so they can work out the bugs.

I started getting texts about half an hour ago:  It's too dark. It's too stressful. It's too hard. I can't do it. I'm already crying.

I have offered him every bit of wisdom and counsel I know: Take a little break. Eat a little snack. Say a little prayer. Just have a little fun!  Apparently if he does any of these things in small doses, it makes a difference.

It won't work. He will call soon, and he will come home without actually participating in this activity that he insists he loves so much. And I will resist the ever-present urge to compare him to the other kids at the camp who won't be coming home tonight, and who will have the emotional and mental stamina to endure a little discomfort and stimulation.

So, this is where I struggle to separate fact from fiction. The truth is, Ben uses his autism as an excuse to avoid things he doesn't want to do. We have a bit of the "Little Boy Who Cried Wolf" syndrome going on, especially when he is supposed to be in a class he doesn't like, read a book that doesn't interest him, or fulfill a responsibility he'd rather not do. He knows the words that will send me reeling to his rescue (they are akin to "I can't breathe" in mother-speak), and darn if he isn't due an Academy Award for his ability to burst into tears when the words alone are not enough. 

The problem is, maybe he isn't faking it. Empirically, his autism does indeed mess with his wiring, and so it's altogether possible that he really can't do it. He's very possibly experiencing something like fireworks exploding inside his head while I encourage him to eat a cracker. What kind of mother does that?

Well, the kind that just desperately wants her child to be like other (neuro-typical) children. That's the bottom line.

The kind of mother who isn't willing yet to throw in the towel. 

The kind of mother who believes that her child has infinite potential.

The kind of mother who doesn't want her child to live with regrets.

The kind of mother who believes in enduring to the end.

And, the kind of mother who is struggling to acknowledge that her child does have limits, and...more and more often these days...seems to be reaching them.

I don't believe that Ben's autism should be a stumbling block for him. A challenge? Yes. Of course. Just like any other mental, physical, or emotional disability would present a challenge for any other human being. But I'm not willing to give up, and I'm not willing to let him give up--not without a fight.

He'll come home tonight--I'm certain of that. I'm equally certain that he'll try again, and again, and again until he flies a space mission all night long and into tomorrow. Autism is Ben's final frontier, and Ben's mission is to explore it, chart it, and embrace it for all the challenges and opportunities it offers.

But tonight, right now, he'll come home--and I'll try to be okay with that. Autism is my final frontier, too, and I'm a weary traveler sometimes.

Monday, February 22, 2016

Have at Thee...

You know how sometimes you think, "Well, at least it can't get worse"?  Never, ever say something like that. It's like taunting, "Have at thee!" to the universe and then being surprised when the Sword of Attila comes hurtling out of nowhere and lops off your hand. The universe is just full of little surprises like that.

So, I really hadn't realized how dependent we have become on pharmaceuticals to manage the highs and lows (mostly lows---abysmal, black-hole lows) of Ben's autism until this weekend, when I stupidly, absent-mindedly, possibly just lazily let the prescription run out.  In my defense, Ben takes his own medications now and I don't see when the bottle is getting empty, but in his defense, he did tell me when he only had one pill left.  And I forgot.  On a Saturday. Saturday evening. After the pharmacy was closed.

And then, because I hadn't realized that life as we know it only exists because Ben takes that particular prescription, I thought, "Well, he'll be OK for a day without them." 

Have at thee, universe.

Saturday night, Ben couldn't get to sleep. Apparently these tiny little pills open a magical portal to that world where Hypnos and Morpheus--those wondrous Greek gods of sleep and dreams--await. No wonder they cost so much, right?

And I thought, well, that's frustrating. Now he's going to be tired in the morning.

He wasn't tired in the morning. Tired is what you feel when you get into bed at 2:00 am and have to get up at 7. Tired is what you feel after you mow the lawn in 100-degree heat and need to sit down for a while.

Ben was utterly debilitated. I tried to rouse him at the crack of 10 to get ready for church.  He moaned from atop his loft bed (the building of which was a major miscalculation on our part not only because it has given him the ability to kick through the ceiling in moments of rage, but also because I can't reach him without the assistance of a ladder).  I ignored the moans and became more insistent--"Ben, get up!"  Moans became cries.  Cries made me irritated.  "Ben--if you don't get up I will take away your iPod and laptop for the entire week!"  Cries became screams.

I told Ben I wouldn't fight with him, and I informed him that I had to take his brother over to the church and that when I got back, he'd better be up. I left. I came back. Ben was up.  Well, technically he was down. Down from the loft bed, down on the floor, curled up in the fetal position, screaming, panting, crying.  I was unimpressed (let's add cold-hearted to my list of qualities) and told him that this wasn't working, and he needed to put clothes on.

He did his best. In retrospect, he really did better than I could have expected considering he was exhausted and devoid of the medication that helps him stay so calm and focused.  His face was covered in red blotches, he couldn't stop crying, couldn't catch his breath from the uncontrolled sobs, but he was dressed.  And I thought, "It won't get worse than this."

Have at thee...

I had placed a bottle of Instant Breakfast on the counter for Ben, thoughtfully loosening the lid for him first, and instructed Ben to go drink it.  I assured him that he would feel better once he had. Ben went to the counter, grabbed the bottle, and proceeded to shake it.

The lid flew off, and in one of those moments where everything suddenly moves in slow-motion, Instant Breakfast was flying everywhere, and suddenly Ben was dripping in the sticky stuff--as were the counters, cupboards, and floor. I'm not sure "scream" accurately describes the sound he emitted at that point.   He was wet, he was sticky, he was exhausted, and his emotional regulator had definitely and entirely shut off at this point.

I did manage to strip off all his clothes, wipe him down with a wet towel (that went well...), replace the clothes with fresh ones, and still coax him out the door to church, but he only stayed for the first meeting and mostly with his head buried in my arms so I could cover his ears and eyes and shut out all stimuli.

At least we survived, right?  Except that I didn't refill his prescription yesterday, either, because it was Sunday. The ox was in the mire--I certainly should have run to Walmart to get more meds--but as I said earlier, I'm stupid, absent-minded, and lazy.   And cold-hearted. So, universe, have at thee.

Ben's home today from school. Drive by the house and get a good look at the Sword of Attila, embedded to the hilt in our roof.  I'm on my way to the pharmacy.

Monday, January 18, 2016

Adjustment and Perspective

Remember the "good old days," when all I had to worry about was whether Ben would have a catastrophic meltdown, punching, kicking, and screaming for an hour, or have to come home from school because he leapt out of his seat without provocation and punched a kid in the stomach?  Ah, how I miss those days.

This year has been exhausting. Maybe it's the change from elementary school to junior high. Maybe it's the new surge of testosterone that suddenly rages through every 12-year-old boy's body. I just don't know.  When the school year began, I got a phone call at least once or twice a day to report that Ben was in the office in the throes of misery which he could not define nor explain. He just cried, buried himself under pillows in the Special Ed Director's office, and demanded that I come and pick him up.  I didn't often go get him, but he also didn't often go back to class.

Now that the teachers and staff know him better, he spends more time in class (though once a day, at least, he is still in the office complaining about something), but often it is with his hood over his head, or his head buried in his arms on his desk, frequently still crying.  Today, Sunday, he was seated with the other young men at the front of the chapel getting ready to pass the Sacrament to the congregation when suddenly he stood up, returned to our pew, buried his head in my arms and cried for 20 minutes. His explanation?  He just suddenly felt upset.

And the tics are tougher to deal with, too.  Here's a new one: He is compelled to "mock lick" everything he picks up.  Well, I take that back. I think the "mock licking" is limited only to hard surfaces, like phones, tablets, books, dishes, rocks...  and what is "mock licking"? It is where he draws the object close to his lips, flicks his tongue in and out of his mouth a few times, and "almost" licks the object without actually touching it. I think sometimes he misjudges the distance and really does lick it, but usually it's only a close call.  A gross, close call.

Fairly recently, though--a couple months ago--I think he may have licked something he shouldn't have (feel free to say "ew..."), and he got a large canker sore on his tongue.  That wouldn't have been a problem for most people, but Ben turned that canker sore into a new tic:  tongue biting.  For almost two months straight he bit his tongue so hard and so often that it was a bleeding, cankered mess. Quite literally, the entire tip of his tongue was just a gaping, white hole, and the rest of it looked like an exploded minefield.  I took him to the doctor, who prescribed a mouthwash that he said might help (it didn't), but recommended I take him to the dentist.  I took him to the dentist who said he had heard of tongue-biting among Autistic children, but had no experience with it. He recommended I take Ben to an orthodontist to talk about making some kind of appliance that would stop him from making contact between his teeth and his tongue.  And all this time, Ben was in agony from the pain, and yet he couldn't stop biting. He cried every time he tried to eat, sleep, talk, or (not surprisingly) go to school.  Those were a miserable couple of months which finally resolved when I purchased him a nighttime mouthguard, and he wore it day and night, and bit down on it instead of on his tongue, which finally healed and then Ben didn't feel compelled to bite it anymore.

In the meantime, Ben barely passed his classes this semester (because he spends more time in the office or with his head down than actually engaged in class), and he passed those classes really only because his resource teachers have exerted Herculean effort to accommodate him while he "adjusts" to junior high life.

How long, exactly, does this "adjustment" take? Because I'm pretty sure that most adults are still trying to "adjust" to junior high. Heck--I'm still traumatized by junior high. There is no such thing as "adjusting" to junior high for even the most emotionally stable kids (not that I count myself among the emotionally stable, mind you), let alone a child with Autism.

I'm a problem-solver. I'm a fixer. It's a rare thing when I just don't know what to do. But I'll admit it: I'm at a loss.  It's tempting to just call it quits and homeschool him, except that neither Ben's nor my sanity will allow that, and I can't even get Ben to do 20 minutes of homework most days, let alone complete all his courses independently.

A friend of mine whose son also has Autism (and who also started junior high this year) has had to embrace a hard, painful reality this year that her son will likely not graduate from high school, will not go to college, and will not move into some lifelong professional career. He has not thrived in the mainstream junior high environment, and is now on a track that will allow him to obtain just a certificate of completion from high school (not graduation). His future probably includes learning some occupational skills and gaining basic employment down the road.  It has been a painful recognition for my friend, who has done everything humanly possible over these past 12 years for her son in terms of his education and skill development. Yet in the end, she is having to acknowledge that there are limits to the heights her son will reach.

Am I being naive in refusing to raise my own white flag? Am I setting Ben or myself up for failure and disappointment? Admittedly I lack any objectivity here, and I am not asserting some Galaxy Quest-like battle cry ("Never give up; never surrender!").  I won't even echo that revolutionary declaration that I have not yet begun to fight; I began to fight years ago.  But I'm battle-weary, and wondering how much longer this skirmish will last. I believe in him, and in the intellect and talent that lie within him. I believe we can weather this storm (apologies for the mixed metaphor there).  At what point do I surrender to limitations? Not yet, not here, not now.

All the same, I never thought I'd miss the days when adding a few new bruises to my collection was as hard as it ever really got.  I never thought I'd reflect fondly on days of drawers overturned in a furious rage amidst a squalor of swearing. Yet now those seem like the simple moments of raising a child with Autism.  And so, sweet perspective, I welcome thee.

Thursday, October 29, 2015

Autism is Ruining My Life

I've never believed that my boys' autism was some kind of cosmic disaster. I don't think it is, and I've spent their lives trying to teach them that first, everyone has "stuff" to deal with, and that second, their particular set of challenges also comes with some advantages that we don't all have.

Joey, for example, has a gift for music that is rare and unique. It serves him well now that he's a member of the Lyceum Philharmonic Orchestra, and I think it brings him a great deal of personal satisfaction to boot.  Ben has an enviable memory, an acuity for understanding the inner workings of things, and a rare perspective on mortality that allows him to not get stuck in the moment-to-moment issues that arise.  I thought I'd done a pretty good job of helping them both feel confident in their strengths without getting mired down too much by their developmental, social, and emotional challenges.

And then as we were driving home from school yesterday, Ben uttered the sentence I never wanted to hear:  "Autism is ruining my life."

We recently "adopted" a foreign exchange student from Japan. He's living with us through the school year, and brings stories of exotic culture and food. Our oldest son Zach is currently serving a church mission in Japan, and our daughter is working towards leaving on a mission herself next summer to someplace that she hopes is more foreign and interesting than, say, Kansas.  Then again, it might be hard to be more strange than Kansas.

So Ben has been thinking about travel, and about doing something different and new. As we were driving, he asked me if I thought that when he turned 16 or 17, might he be able to be a foreign exchange student to another country, because he really wants to?

Honesty is the best policy, right?  I thought so when I replied, "Probably not, Ben. I think your autism would make it hard for you to go live in a different place, with food and customs you don't know, among strangers who don't know about some of the things you struggle with."

Cue the outburst:  Autism is ruining my life.

I went into my typical rhetoric about how his autism was a challenge sometimes, but that it was also a strength. I reminded him that we all have problems that we are working to overcome, and that his life didn't need to look like everyone else's life to be meaningful.

And then he told me that my problems weren't keeping me from living the life I wanted. He lamented that his admittedly deficit social skills prevented him from having friends, and his inability to adjust to change restricted his opportunities to try new things--to go out and embrace all the adventures that life has to offer.  I didn't know he was so self-aware. This is new.

And for the first time in 12 years, I really didn't know what to say.  He's absolutely right on all counts. Those are big problems, and he may or may not ever overcome them. My platitudes about universal struggle or compensating for the trials with an extra dose of strengths paled in comparison to the frustration and hurt that I heard in his voice as he expressed that it really wasn't fair that he couldn't be like "everyone else."

Most people see the world as their oyster, peeking open and offering untold treasures to whomever is willing to reach for them.  Yesterday I discovered that Ben's oyster is clamped tightly shut--at least, he feels like it is.

In some ways, I have to acknowledge that he's right, and that breaks my heart.  But I promise you this: we're going to use every knife, screwdriver, hammer, and explosive that we can lay our hands on to get Ben his pearl. If the world isn't opening to him as he wants, we'll open it for him.

Autism is not going to ruin his life.

Saturday, September 12, 2015

And Then There Were Two.

The signs have always been there: Unusual, long-term obsessions with things like men with beards, vacuums, trains, the Titanic, Spiderman, Iron Man, and most recently, Freddie Mercury; extremely limited (and sometimes strange) food interests (for example, hot dogs with jelly, or subsisting almost solely on chicken nuggets and Ramen noodles for years); extreme difficulty connecting to his peers even in preschool and throughout elementary school. A rare acuity for recognizing music, and for hearing even the most subtle instrumental voices and harmonies buried within complex orchestral scores, being brought to tears by certain musical pieces even in infancy.  Tics, speech was all there.

Yet, in spite of the flashing red lights and every warning sign short of a billboard appearing in the front yard, in spite of having a second son who has had an Autism diagnosis since the age of 5, we missed the mark, and Joey carried a mishmash of other diagnoses throughout all of elementary school and junior high, ranging from anxiety, to Tourette Syndrome, to ADHD, to depression.

The problem is that he was just too smart. He was too good at coping, and adapting, and compensating for his struggles just enough that even when we had him tested during the 6th grade for psychological challenges, he dodged the "Autism" diagnosis somehow (I'll tell you how in a minute) and ended up with a list of other diagnoses instead.  But it couldn't last forever.  Finally, last spring, as school got harder and bullies got meaner, Joey couldn't cope and adapt his way out of his challenges any longer, and things fell apart for him, so severely and dangerously that we had to send him away to a wilderness treatment program, where he ended up staying for 101 days.

While he was there, we sent another psychologist up to do a new battery of testing, and finally embraced an accurate diagnosis:  Joey, like his younger brother Ben, has Autism.

So why did it take us 15 years to get Joey diagnosed?  In the years since Ben was diagnosed, I've talked to dozens of parents, and friends of parents, who have been told that their child (or their friend's child, or their grandchild...) might have autism, and invariably I hear this response:  We (or "our friends," or whoever it is...) don't want to have our child diagnosed with Autism, because we don't want our child to be labeled.

I think that is a noble sentiment. I really do.  But forgive me for being blunt and a bit harsh when I say this: it is also garbage. Here's why:

First, any child who truly has autism is already struggling.  The diagnosis won't suddenly cause a new problem; it will explain an ongoing one. If your child is in school, then I guarantee that he/she is not getting along with peers, is not succeeding in the traditional classroom, is experiencing some kind of academic deficits, is probably disrupting the learning environment in some way. If he/she is not in school yet, then the problem is happening in play group, or at church, or just among family members. But the problems are already emerging.  If you think your child is not already being labeled, you are delusional (again, I apologize for being harsh. This is intended to be a wake-up call).  And that label is being whispered among classmates, across dinner tables, to other mothers at playgroups, and during faculty meetings. That label may (sadly, tragically, but truly) include words like "Trouble-Maker," and "Problem-Child."

When Joey was in the 3rd or 4th grade, he came home sobbing one day because a couple of his so-called (and only) "friends" told him that their moms had said that they couldn't play with him anymore. I called one of these moms to see if this was true, and she told me that they had decided that they weren't going to let their kids play with Joey anymore because they just didn't think he was a very good kid. She wouldn't even explain to me why, or tell me if anything specific had happened that I could talk to Joey about. They had just unilaterally decided that my child was "bad," and that their "good" children shouldn't be unduly influenced by him.  My child wasn't bad. He had autism. How sad that I couldn't explain this then (and yes, I still whisper unkind words in her general direction whenever I see her at community functions or drive past her house. What kind of judgmental-self-righteous-waste-of-human-flesh does that to a little child?? I really need to work on forgiveness. Maybe tomorrow).

Today, where 1 in 68 children across the United States (and that number is 1 in 54 in Utah) are diagnosed with Autism, and where extraordinary people like Temple Grandin and Carly Fleischmann have helped to make such advances in Autism awareness;  where the diagnostic criteria for Autism really do make it clear that Autism is a broad spectrum of both struggles AND strengths, the "label" of Autism is far different from what is was 50, 30, or even 15 years ago. Today it is a "label" that invites compassion, patience, and understanding.

Second, that diagnosis of Autism is the key to services that your child desperately needs. Without it, you may get some help in the form of a 504 plan (a few educational accommodations for extra time on tests, or sitting closer to the teacher) if you can get someone to slap together some other diagnosis for ADHD or whatever else you think might be better than having Autism.  But that won't help your child. My heart sinks when I consider that with a proper diagnosis in 6th grade (or even earlier), Joey could have accessed resources for social skills, behavioral skills, psychological support, and anything else that popped up over the years. Instead, he was on his own. And eventually he crashed.

Let me tell you this: You don't EVER want to get to the point where you are so desperate to save your child's life that you have to send him away to a wilderness treatment program. That first night, when you know he is on a dark, cold mountain, crawling into a sleeping bag, not filling his tummy with the snack he has eaten every single night since he was five (because routine is everything to him), not being kissed goodnight, frightened and alone among strangers, that night, you will not be able to get into your own warm bed. You won't get into your own bed for days.  You will ache with worry, wondering what you could have done differently to save him from being sent away. In Joey's case, maybe we could have gotten him diagnosed earlier so that he could have gotten the support and help he really needed.

Third, if you avoid the "label" of Autism, you are sending a message to your child that Autism is something you are ashamed of, and something you are trying to avoid. Look: If your child has Autism, then he/she has Autism. Avoiding it won't change it.  If you see a cancer growing on your skin, you can avoid going to the doctor for as long as you want, telling yourself that as long as you don't go, then you don't have to know that you have cancer. But guess what? You still have cancer, and eventually you are going to have to treat it.

If your child has the signs and symptoms of Autism, then the time will come, sooner or later, that he/she is going to be diagnosed. My husband--a clinical psychologist who specializes in psychological testing--has diagnosed many, many adolescents and even adults with Autism much later in life than they should have been diagnosed.  Why? There are plenty of reasons. Some slip through the proverbial cracks as children. Some have been misdiagnosed earlier in life. And some had parents who just didn't want to know. But eventually the diagnosis always comes.  Do you really want to plant a message that when that diagnosis comes, you will be disappointed and ashamed?

Here's a thought: Face it head-on. Embrace it for what it is. The sooner you do, and the sooner you access help and services, the better your child will adjust, and adapt, and thrive.

And here is where I become the proverbial pot calling the kettle black. Here is where I speak from experience, as one who knows too well.  Why wasn't Joey diagnosed when he should have been? Primarily because we didn't want to know. We didn't want two sons with Autism. We couldn't believe that was possible. And so we convinced the first psychologist who tested Joey that Joey was much different from our other son who did have Autism, and therefore Joey must have something different. In fact, we convinced ourselves that he must have something different. It couldn't be true. We could not have been more closed-minded.

It's true that our boys are different. They have different deficits and different strengths. Autism is a spectrum. It looks different for every child.  But the facts are irrefutable, and knowing is so much better than wishing for something different.  Finally Joey is getting the help and support he has always needed.

Autism is not his label. It is how he is learning to finally live his life. And after 15 years, it's a wonderful thing to see.

Sunday, July 26, 2015

Unexpected Storms and a Tic-ing Time Bomb

Stardate 2015.7 (or in the American calendar, that would be July, 2015). We're supposed to be having a drought. Not enough snow last winter, they say. And yet all through May, it never stopped raining. It seemed like every week there was another storm, and another, and don't get me wrong; I don't mind the rain at all. At least, not the stuff falling from the sky onto the grass outside.

But the storms of life are wearing us a little thin around our home these days.  Ben is feeling the brunt of them.  Here's how I know:

Every week, I take him to cello lessons.  He's been playing since last October, and though admittedly I'm a biased observer, I think he's pretty good. His teacher tells me he has a gift--an ear for the sound of the cello, and an unique ability to remember the music and reproduce it. Besides that, Ben will tell you he was born with "cello hands"--long, strong fingers perfectly constructed to press down the strings on the cello's fingerboard.  Look--I don't care if he has a gift or if he has natural "cello hands." I only care that he is holding a musical instrument and producing music, which affords him an opportunity to express emotion.  Anytime he gets that opportunity, we're going to take it.

So a few weeks ago, right in the middle of his lesson, doing nothing in particular except fiddling through the middle of a relatively benign new song, Ben suddenly slumped back in his chair, dropped his cello down against his chest with one hand, dangled his bow down to the floor with his other hand, and burst into tears.  I was sitting on the couch across from him, and at first I wasn't quite sure what was happening, so I said, "Ben, what's going on, Buddy?"  He just looked at me with the most perplexed expression on his face, while tears streamed down his cheeks. His teacher was as confused as I was.

I hurried to his side and lifted his cello off him, which his teacher immediately took from me in turn. I cradled Ben's head in my hands and just held him for a minute, and then the moment passed and he was fine again. He took his cello back, gave me a quick upward twist of his mouth that resembled something like a smile, and went right back to the song he had been learning.


Yesterday we went to a movie as a family, and the tics started up. This has been a recurrent theme for the past couple months...every time we take Ben to a movie, he gets into that theater, sits down, and begins this terrible, awful, really unsettling snorting sound--something between a sniff and a snore (more on the snore side).  When the theater is relatively empty, this is not much of a problem except that it drives the family crazy. But yesterday the theater was completely full--every last seat filled with moviegoers excited to watch the adventures of Ant Man unfold.  And it began.  One loud snort, then again, and again, and again. Soon the guy in front of us was turning around, glaring at me (as if I was supposed to control my child, and as irritated as I was at his intolerance, I couldn't blame him). I whispered to Ben to stop, and he let out this [not quiet] whimper, buried his head in his hands, and emitted several more snorts.

"Ben!" I whispered, even more urgently as the man ahead of us shot us yet another even less patient glare. This time Ben turned completely backwards in his seat and began crying, all the while snorting and sniffing. The impatient man and his wife rose and moved to unoccupied seats at the front of the theater. Another snort. A man two rows ahead of us gave me a look. I'm a little embarrassed that I tried to coax Ben through almost an hour of the movie, distracting him with whispered conversation, pulling him onto my lap...nothing worked and the snorting continued to escalate until Ben begged to leave, crying and pleading that he couldn't control what was happening. I told my husband that I was taking Ben home, scooped up our things and left.  I'm surprised we didn't receive some applause from our surrounding seatmates upon our departure.

As soon as we were in the lobby, the snorting stopped, as if it had never happened.  As we walked to the car, I asked Ben what was going on. He doesn't know. The theater is loud, and the screen is bright and overwhelming, I guess. It's too much stimulation.  But this tic is relatively recent and getting worse every time we go to the theater now.  Ben really wants to figure out a solution before Star Wars comes out in December. Until then, I think our movie days are over.

I guess some of this is just about all the change that Ben is experiencing. I haven't mentioned that he didn't get into American Heritage Academy, but we found a school about 20 minute away--a charter school with a Space Center (one of Ben's "things") that has a heavy emphasis on technology and fine arts. We feel like this is a great fit for Ben, and as it is a 7th - 12th grade school, Ben's brother Joey will also be attending.  So, new school, birthday (Ben turned 12 last week, which means some big changes for him within our religion as he became a "Deacon" and will take on some responsibilities within the church now), Ben's oldest brother away on a church mission, Ben's sister leaving for college in a few weeks...everything is unsettled.

It's storming, and all the change and uncertainty is frightening and confusing--hard to make sense of for most of us, really. But the chaos turns Ben into a tic-ing time bomb, I guess.  And I need to figure out how to diffuse him...and soon.

Friday, April 24, 2015

Stripping Down and Starting Over

It's been more than a year since I posted on Ben's blog. We've been doing fine. There hasn't been much to report. Once you get into a rhythm, you just stick with it, and that's where we've been for the last year or so. During the school year, it looks exactly (and I mean, exactly) like this: I get Ben up, he takes a shower, puts on all clothing except pants and shoes, drinks a Strawberry Instant Breakfast and takes his medication, watches t.v. for 1/2 hour, puts on his pants and shoes, slings his book bag over his shoulder, and off he goes to school. Even dropping him off includes certain procedures and rituals of stopping, saying routine words, and waving at just the right moment.  After school, every day has its own routine, too, but there is a routine. And so long as we stick to it, life is pretty normal.

But things are changing now.  For starters, we are a month away from finishing elementary school, and figuring out where Ben will go to Junior High.  The very term "Junior High" churns my stomach. For "normal" children..."neuro-typical" children...Junior High is essentially just a cesspool of raging hormones, social turmoil, and interpersonal drama. Throw in a kid with autism, and while there will be some children who stick up for him, there will be plenty of others who, because of their own limited and seriously lacking self-identify and self-esteem, will see him as easy prey. I have no doubt that he will be bullied and mocked. And I know how Ben handles being bullied and mocked: It typically involves swear words, physical retaliation, and once home, an immediate emotional meltdown accompanied by a strip down to nakedness so that he can climb into bed under his autism blanket and spend the rest of the day with his headphones on watching something on his iPod.  Granted, this coping strategy is considerably better than emptying all his drawers onto his floor, shattering dishes, and spitting and punching me or anyone else who comes into the room to intervene...I am counting my blessings for the improvements he's made in that regard.  But that would still be a pretty hard way to spend the next three years.

In light of that potential outcome, we are desperately trying to get Ben into a private school next year called "American Heritage Academy."  It's expensive, but a cost I will willingly pay if they will accept him.  Here are the caveats:  First, he has to demonstrate that he can function within the mainstream classrooms, because they don't offer resource or special education classes.  The teachers at the elementary school tell me that Ben is perfectly capable of succeeding--academically, at least--in mainstream environments. In fact, I got a phone call from the resource teacher just two days ago who said that she just completed Ben's final testing, and he tested "off the charts" in both math and writing--both areas where he had been working in the resource room on his IEP. She suggested that we talk about dropping his IEP as we move into Junior High and consider just giving Ben a 504 instead.  [For those of you don't know the difference, an IEP is a state-funded plan that provides for resources such as speech therapy, counseling, resource and special education help, etc., where a 504 includes no funding but allows a child to receive some accommodations such as extra time on tests, sitting closer to the teacher, and so forth. Both are technically "legally binding," though a 504 has very little "bite" when compared to an IEP. Children with certain diagnoses are given an IEP (including autism and other learning disabilities); children with other diagnoses (like ADD, for example) are usually only given a 504.]

Let me digress for a minute to explode about that suggestion.  ARE YOU KIDDING ME???  She wants to strip away the only safety net that we have for this autistic child--the only thing that gives us access to services that allow him to have small classes, to work with the psychologist, to get extra help--and move him to a 504 where he essentially will get NO services whatsoever, but could get a few little accommodations if he needed them?  The only reason he has finally begun to succeed after all these years is because of his IEP. Now, moving into the cesspool, she wants to yank that out from beneath him with a pat on the head and a "Good luck--go get 'em, Tiger!"? Look. I can understand that he doesn't need to be in resource for math and writing. Great. But he is still far below his peers socially and behaviorally. He still needs an IEP. He still needs access to other services (social skills support, small group environments, etc.), even if they aren't academic. I will fight all the way to the White House to hold onto his IEP as we move into Junior High if that is necessary.  What in the high holy heavens could she possibly be thinking?  Ok. End of rant. Deep breath.

At any rate, if we get into American Heritage, whether he has an IEP or a 504 becomes a moot point (since they don't offer special education anyway), except that if he has an IEP, there is state funding allocated for the IEP that we can access and apply to his tuition at American Heritage. It's not much...a pittance, really...but every bit helps, right?  Besides, it takes more than Valley View saying Ben could keep up in the mainstream classroom. He actually has to prove it by doing some testing and by demonstrating that he is academically qualified to perform at a 7th grade level.  So here's the big question: does the public school system version of 6th/7th grade readiness match what American Heritage is going to test him at and expect him to be at? I'm really anxious about that, especially since he does need a few accommodations still for handwriting (he has a diagnosed dysgraphia--handwriting disability) and math facts to keep up.  Testing is on May 8th. Fingers and toes crossed.

The bigger issue, and the one that really scares me, is that even if Ben passes the testing, American Heritage still has to decide that Ben is a "good fit" for the school. We filled out all kinds of paperwork, including a long series of paragraphs that Ben had to write himself, and Ben had to go in for an interview that I thought he did a good job with, except that...well...he has autism. So he talks with a unique affect, and he has unique tics that he does with his throat and his face. It's clear that he would be "different" from the kids there who don't have autism.  Will they discriminate against him because of his autism? Will they not want him because he's different? Will they feel like he is just too much work for their teachers, or that he might be too distracting for the other students? These aren't issues we've ever had to face before.

It's probably not the last time we'll have to face them, though. Ben will come up against these kinds of questions every time he applies for a job, or asks a girl out on a date when he gets older. So times are a-changing. As Ben gets older, some of the more real and long-term implications of having autism are becoming evident, and while we don't have to cross any bridges just yet, it's a little strange to see them begin to dot the horizon.  Ben isn't the only one who likes the routine. I like it, too. I don't want it to change.