Category Archives: autism

Excruciating Ride, Part 2

Continued from Excruciating Ride
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Photo Credit: Benjamin Wong

I often search Flickr for just the right photo, but I don’t always find what I want. In this case, the picture is worth about a million words.  

The roller coaster we’re riding with our son right now isn’t any fun.

As I walked into the hall, my son whipped the pencil away from his chest.

“What are you doing?” Reaching for the pencil, I leaned over to see whether he’d progressed through his school work. I used the pencil to point, summoning as much nonchalance as I could.

“You need to fill in these blanks in pencil, please.” I handed the pencil back, adding, “Pencils are for paper; pencils are not for poking people.”

He nodded and took it.

After he finished his school work, I gave him a journal assignment. He wrote about suicide by a pencil stab.

An hour later, he growled in frustration when I wouldn’t believe an obvious lie. He left the house and headed down the driveway. The timing worked well, because we needed to head to an appointment, so I pretended to think he was going to get in the car.

Unlocking the vehicle, I called, “Hey, thanks for getting out of the house so quickly so we can be on time! Do you want me to meet you at the end of the driveway?”

He froze, then turned slowly and shuffled back to the car, muttering, “wearing the wrong shoes, anyway.”

His sister gave him a sharp look. “Were you trying to run away?”

“Yeah, but I need my other shoes.”

She shook her head. “Running away is stupid. What are you going to eat?”

In a cool, flat tone that gave me chills, he said, “Dead squirrels, probably.”

By late August, I was spending an average of seven hours per day closely monitoring our son. Completing tasks became almost impossible; he didn’t want to move, so he began a sabotage campaign. When we put the house on the market, we asked the kids to try to keep things neat for the showings. He thought buyers would refuse to purchase the house if he worked against us. He trashed his room, wrote on the walls in permanent marker, decimated a large planter…every time he wasn’t by my side, I looked for the next bit of destruction.

He did the opposite of whatever we asked and began doing things he’d never done in the past, like climbing out of his window to leave the house. Hubby and I did our best, but…have you ever tried to keep an 11 year-old in sight at all times? It’s even harder than it sounds.

Cameras and a newly-installed alarm system helped, but we still couldn’t supervise 100% of his day. Showers became especially problematic, because he’s really too old for one of us to stand there. He plugged the drain with toys and toilet paper, defecated in the tub and filled the curtain with water, letting it go when it became too heavy (all over the bathroom floor).

Because he is diagnosed as “on the edge” of the Autism spectrum, the in-home counselor suggested we apply for ABA therapy for help with behavior modification. Good ABA therapists have successfully helped non-verbal, low-functioning children learn to communicate and to perform self-care tasks. If his apparent inability to follow directions stemmed from the autism, the therapists would be able to help. And maybe, once he had a habit of doing the right things, he would feel better about himself.

While I sat outside with the supervisor, outlining the challenges of the last several months, another staff member sat with our son to evaluate him. I explained to the supervisor that he’s great one-on-one with an adult, so I expected the other therapist to find nothing. Sure enough, when she joined us, I saw The Look.

The Look, n., facial expression indicating the parent must be out of her mind, as this child is brimming with intelligence and compliance. 

Thankful for backup from the in-home counselor, the supervisor and I explained there is more to this kid than becomes obvious in one meeting. We were approved for services, but staffing shortages meant ABA wouldn’t start for several weeks.

A week later, the threats of suicide came almost daily, sometimes several times a day. His moods swung between anger and depression. I couldn’t leave him alone with his sister for even a minute because he started lashing out at her.

ABA wasn’t going to be enough.

We began looking for residential treatment, this time for a program that lasted more than a few days.

Continued

 

 

 

 

 

The Next Thing

 

After muddling through six years of public school, advocating for services, collaborating (and occasionally arguing) with school staff, stressing out every time the school number appears on the caller ID (what happened NOW?) we’ve finally decided to Give Up.

We used every resource we could find. Brought every possible idea to the table. Suggested successful methods tried by other parents.

Although we have done everything within our power, both kids’ performance and behavior at school has continued to tank.

He doesn’t want to interact with other kids and attempts to get suspended so he can come home.

She’s failing on purpose because she “gets more attention for a failing grade than a passing grade.” (Not kidding. Parenting a kid with RAD is the equivalent of standing on your head and reading backwards. Toss out everything you know about parenting.)

Finally, we’ve reached the last straw. I am going to try the only thing left in my arsenal.

Next school year, I’m going to let Hubby sleep with the teacher. 

No, really.

Because this fall, the teacher will be me.

We give up trying to get our boy to mold his Autistic behind into a hard plastic classroom seat.

We give up cajoling our girl to perform in a classroom, when the attention she craves is ours.

We give up what we’ve held tight for so long.

We empty our hands, holding them open to grasp the next thing.

We are going to home school.

Having been home schooled myself for almost a decade, I think I have a pretty good handle on the realities of home schooling. I’m under no illusions.

Here’s how I would like to imagine our year will go:

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Photo Credit: Susy Morris

But I’m fully aware that this is much more likely:

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Photo Credit: Astrid Budi

It won’t be easy, and some days may not be much fun. In the long run, though, it’s what they need.

And somehow, I’m really looking forward to finding the best ways to help them learn. Researching learning resources is becoming something of an obsession.

Plus, I get to sleep with the Principal.

 

 

 

Give Up

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Photo credit: imelda

This has been the year from heck, educationally speaking.

Thank God for our Assistant Principal. Not only is he adopted himself, he also has an incredible ability to empathize with trauma kids and understand kids with special needs.

If only the IEP team members were all so gifted.

Several times this year, I requested meetings to discuss our boy’s classroom behavior (which is unconventional but explainable when one takes the time to see through his eyes). His Autism Spectrum Disorder has begun to shine through with amazing beauty—or a vengeance, depending upon your perspective.

I requested a one-to-one behavioral aide, which he’s had in the past but never with this particular school. The aide gave him an extra layer of self-control by monitoring the situation for triggers, then reminding him to focus.

We’re lining up for lunch. Other children will be close to you and may touch you. This is okay. You’re perfectly safe.

or

Sitting quietly during testing is important. You’ll need to focus. No chirping, squeaking or other noises. I’ll give you a check mark for every minute you are silent.

This didn’t always work and we went through several aides before finding the right fit, but by the end of first grade we were able to phase out the aide. In fifth, he regressed. We weren’t at physical-aggression-because-I’m-angry level anymore, but his self-management went out the window by the end of September.

There is much to be said for personality match when pairing a teacher with a special needs child. We had stellar matches for him in third and fourth grade; I credit his teachers for the incredible leaps he made both in social and educational arenas.

The fifth grade teacher is a GREAT teacher. Neurotypical kids probably adore her.

But she’s not a personality match for my son, and he’s not a match for her. No one is at fault; it’s just the way things are.

Part of the struggle, I believe, is a simple lack of exposure. Maybe she’s never had a Spectrum kid in her classroom.

Thanks to trial and error, the fourth grade teacher found that putting him in a desk by himself—in the corner with fewest articles on the walls—helped him focus. He began participating more fully in spite of the separation she perceived as potentially problematic.

I suggested (and the school psychologist agreed) that the fifth grade teacher should do the same. Until then, she’d kept her classroom desks in groups of four or five. One of the daily points of contention happened when another child touched his things (inevitable at close range, because his desk tended to overflow). The teacher disagreed with the tactic but said she would comply with the group consensus.

Arriving in the classroom to drop off supplies about a week later, I found that she had placed his desk alone, as asked, but IN THE MIDDLE OF THE ROOM, allowing for three-hundred-sixty degrees of incoming stimulation. Anyone with experience would never consider the middle of the room a viable spot for a kid with ASD.

Our boy is focused on the end result. Consequential forethought is rare; he almost never thinks about how his choices may affect others.

For instance: a friend told him that when he stamps his foot, his shoes light up. He neglected to provide a demonstration. Our guy thought about those lights all day. His impulse control held fast until about thirty minutes prior to pickup. He couldn’t take it anymore. The light-up-shoes called his name.

He ran up and stamped the kid’s foot.

The teacher wrote me a note, stating he had “viciously kicked” another child. Write-up, suspension.

He came home with a packet of papers to complete. He sat in a chair all day and worked (and got almost everything correct).

For this kid, suspension = joy.

He can learn and do his work with no distractions.

About two weeks later, our girl was home sick. Boy wanted to stay home as well. No fever, so off he went.

I sent a note to the teacher and left a message for the assistant principal, letting them know he may be out of sorts or pretend to be ill because he really wanted to be at home.

Thirty minutes into the school day, he pulled a chair out from under another child. He truly didn’t think about whether the child would be hurt (thankfully not); he just figured that if stamping a kid’s foot sent him home, this should also do the trick.

After a phone conference with the Assistant Principal, we agreed on after-school suspension for several days, to prevent a rash of must-find-a-way-to-get-suspended behaviors.

Again, I called a meeting, explaining (for the millionth-ish time) my request for a one-to-one behavioral aide. An aide could help him process the situation. Could see—as I often must—the potential issues and prevent a problem.

For instance, the behavioral aide would have noted he left his desk and immediately required him to sit back down. He would have never made it halfway across the room in the first place, much less had the opportunity to pull out the kid’s chair.

The aide could walk him to-and-from class, preventing the spark of hallway chaos from lighting his trigger fuse. Might recognize hyper-stimulation and ameliorate his angst before it ballooned into behaviors.

The IEP team, in spite of my pleas, turned down my request because

he’s not failing.

In fact, he’s doing quite well.

He’s “unable to focus,” he “refuses to participate” and “doesn’t follow along with the class,” yet his grades are above average.

And because we must keep him in the “least restrictive environment” for his needs, this precludes the need for a behavioral aide.

When they announced the reason, I stared in shock.

You’re telling me that he constantly distracts the class, he’s not able to focus or self-manage, he doesn’t know the material, he can’t get along with others and he’s a problem that must be solved, but you won’t allow me to procure a one-to-one aide because his grades are too good.

Yes, that’s exactly what they were saying.

And so,

I Give Up.

Not on my kid, and not on his education.

And I’m sure as heck not telling him this:

I give up stressing about his classroom behavior.

 

Sometimes, the only thing left to do is give it up.

Because

you have to let go of what’s in your hands before you can pick up anything else.

And because sometimes,

moving on to the next thing is more important. 

He’s Trying

From Dictionary.com:

trying [trahy-ing]

adjective
1. extremely annoying, difficult, or the like; straining one’s patience and goodwill to the limit: a trying day; a trying experience.
irritating, irksome, bothersome, vexing.

try [trahy]

verb (used with object), tried, trying.
1. to attempt to do or accomplish: Try it before you say it’s simple.
2. to test the effect or result of (often followed by out): to try a new method; to try a recipe out.
3. to endeavor to evaluate by experiment or experience: to try a new field; to try a new book.
4. to test the quality, value, fitness, accuracy, etc., of: Will you try a spoonful of this and tell me what you think of it?
5. Law. to examine and determine judicially, as a cause; determine judicially the guilt or innocence of (a person).
6. to put to a severe test; subject to strain, as of endurance, patience, affliction, or trouble; tax: to try one’s patience.
7. to attempt to open (a door, window, etc.) in order to find out whether it is locked: Try all the doors before leaving.

Considering the week we’ve had, I find the first listed definition of “trying” interesting and possibly prescient. Does Dictionary.com know my life?

First definition of trying, adjective. Extremely annoying, difficult, or the like; straining one’s patience and goodwill to the limit:

I woke to a loud slam: our refrigerator door. Checking the baby monitor (which keeps me from having to roll out of bed at 6 am if the boy’s just getting a snack), I could tell he was “sneaking” whatever it was. I trotted downstairs. He heard me coming and hightailed it to his room.

“What do you have?”

He produced an egg.

“Why do you have this?” Still bleary-eyed, I thought perhaps he assumed it was hard-boiled. “Do you realize this isn’t cooked?”

“Yes…I wanted to throw it at a tree.”

UGH. He’d behaved well all weekend, so we allowed him general free rein of the picnic junk food. I was surprised at his lack of reaction, thinking maybe his intolerance of sugar had waned…nope. Heeeeere it is.

I replaced the egg and noticed another was missing (I’d just bought the carton).

First definition of try, verb. To attempt to do or accomplish:

I walked into his room and found that he’d had an “accident” and tried to clean it up himself. Yes, junk food is still a bad idea.

Second definition of try, verb. To test the effect or result of:

The good news? He used the appropriate smell-killing enzyme liquid to such excellent effect that his bedding had no smell at all, in spite of the obvious…incident. Efficacy of Nature’s Miracle Urine Destroyer even on non-urine accident = confirmed.

(Chewy.com is not paying me to advertise.)

Nature's Miracle Urine Destroyer, 1-gal bottle

The bad news? He dumped the entire bottle on it. Ah, well…at least he tried.

Third definition of try, verb. To endeavor to evaluate by experiment or experience:

I gathered his bedding and found the other egg swaddled in his blankets. Hatching a chick? Nope. He just wanted to throw it to see what would happen. My little mad scientist (ok, let’s be real; when he does “science,” I bring the “mad”).

Fourth definition of try, verb. To test the quality, value, fitness, accuracy, etc., of:

I feel the quality of my ability to mother in appropriate ways is often tried and found wanting…Egg Incident #1 (because I’m sure it won’t be the last) is a perfect example. Instead of praising him for attempting to clean up the mess himself (which, in hindsight, was a monumental accomplishment), I freaked out over the ENTIRE BOTTLE dumped on his (thankfully waterproofed) bed and over the egg—a potential mess—swaddled with care in the clean end of his bed.

Fifth definition of try, verb. To determine judicially the guilt or innocence:

Rather than give him props for attempting a clean-up after his incident (which is probably what triggered the need for crazy), I judge-and-juried him for the potential egg mess and for not coming to get me for help with the cleanup. Then, I found that he’d tossed his soiled shorts in with my CLEAN LOAD OF LAUNDRY and started the washer again, which meant I had to run the entire load on “sanitize” and couldn’t dry the load for another two hours. I know it’s my own fault for packing a schedule too tightly, but I had a limited amount of time in which to complete several tasks that day. The last straw (last shorts?) sent me over the edge of my sanity.

Sixth definition of try, verb. To put to a severe test; subject to strain, as of endurance, patience, affliction, or trouble; tax: to try one’s patience:

In my defense, we haven’t had respite for more than a couple hours in almost a year and I’m completely drained. If the boy isn’t getting into something he finds interesting (which means items broken, a mess to clean up or some other form of work for me), the girl is intentionally tanking her grades or sabotaging the boy.

My endurance is shot, my patience is tried and worn.

I’m exhausted.

So is Hubby.

But, being sapped and weary is no excuse for bad behavior. How can I expect him to do the right thing when he’s spent, if I don’t provide the example?

A few hours after the egg-in-the-bed trick, I apologized.

“You know better than to be wasting food and creating a mess, but I am sorry for overreacting. You did a great job trying to clean up after yourself. You even started the washer correctly. I wish you’d put the clean clothes in the dryer so we’d have room for your bedding, but I know your intent was good. I appreciate the hard work you did to clean up after yourself. I am very sorry for losing my mind and yelling.”

 

Seventh definition of try, verb. To attempt to open (a door, window, etc.) in order to find out whether it is locked:

We do what we can. Some days we fall down. But if we keep trying the locked doors, sometimes we find that they’re open.

He hugged me. 

“It’s okay, Mama. You’ve had a rough month.”

Ah, yes. Rough.

Sometimes, all I can do is laugh. At least he’s aware. That’s progress. And even though his behavior is trying (first definition of verb, adjective), I do believe he is trying (first definition of try, verb) to improve.

And yeah, it’s a waste of food, but maybe not a waste of connection: I think I’m going to schedule an egg-throwing contest.

Outside.

Chinese Lantern

If you’ve seen Disney’s Tangled, you may remember the Chinese lanterns filling the sky with warm light.

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Photo Cred: Chris Alcoran

Those lanterns are truly beautiful…in theory…with adult supervision…and safety measures in place.

 

 

See, this is inspiring, right?

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Photo Cred: Keith Williamson

Right?

Of course it is.

And a similar vision inspired our kid.

Sometime in the last month, our boy watched a “how to make your own Chinese lantern” video. This morning, he decided to put that knowledge into practice.

Without telling us.

I woke this morning to the unmistakable smell of burning plastic. Considering his propensity for experimenting, my first thought was,

What the heck did he put in the toaster?

I threw on my fluffy white robe and stumbled down the stairs.

“WHAT is that SMELL?”

Leaning against his doorframe with arms folded, I knew I exuded confidence in my momming abilities. Unfortunately, the fluffy makes-me-look-like-a-bunny-rabbit robe cancelled out my scowling face.

He immediately lied.

“Uh…I think that’s my toast.”

No, son, I’m sorry. Toast does not smell like Daddy did the day he replaced an outlet and found out our home’s previous owner had not marked the circuit breakers accurately. Shocking.

Our daughter appeared in the hall.

“Hi. I wiped the frame of the bathroom door, the spare bedroom door, my door and now I’m going to wipe the laundry room door.”

Due to some negative behavior this week, she earned a few extra chores and I told her last night that she needed to have them done before Daddy arrived home so she could have dessert.

Getting up in the morning to get them done is a strategy she’s used before, but giving me a detailed rundown of the few items she’s done is a clear signal that something weird is going on.

I thanked her and then stood in the kitchen, trying to figure out the quickest way to get the truth without the benefit of coffee to organize my thoughts.

The lighter on top of the fridge caught my eye.

“Hey. Did you see your brother with a lighter this morning?”

She paused. Froze like the proverbial deer in headlights.

“Did you?”

She shrugged. “Yes.”

I returned to his doorway. “What were you doing with the lighter? You have one chance to tell me the truth because I do not have the energy for this right now.”

He: “I was trying to make a Chinese lantern on the back porch. And SHE was laughing.”

She: “NOOOOOO! I was sitting at the table eating my breakfast! I wasn’t outside.”

After allowing them to spout about thirty seconds of conflicting stories, I said, “I’m going to look at the back porch. (To her): If I see your footprints in the dew, you are going to be in deep trouble because you knew he was playing with fire and didn’t come get us. (To him): If her footprints aren’t out there, YOU are in trouble for lying for saying she’s involved. You guys have from now until I get to the door to tell the truth.”

They both insisted they were telling the truth. No confessions.

Unfortunately, the dew didn’t cooperate. No dice on the footprints. The girl, however, couldn’t help herself. She hovered in the doorway, checking. I looked around and couldn’t figure out where the plastic smell originated.

“So, I can’t find the burned plastic…” I was talking more to myself than to her, but she answered.

“Oh, it’s right here,” she grinned, flipping the Welcome mat over. Sure enough, it was covered in melted grocery bags.

Then it hit me. The blinds were closed on the back door, and she said she’d been eating breakfast. At the table. If true, there’s no way she could have seen him burning the bag.

“So. You were here.”

Her eyes widened with feigned innocence. “I wasn’t outside!”

Mama Radar kicked in. There’s the tell.

If only she’d use her semantics superpower for good.

“You weren’t outside. But you were standing in the doorway with the door open. That’s why the whole house stinks. If the door had been closed, the smoke would have stayed outside.”

“But I wasn’t outside,” she repeated.

“Right,” I said, “but you know the issue isn’t about whether you were outside or not. The issue is that you stood there and watched him playing with fire. What are you supposed to do if he does something dangerous?”

“Come get you.”

“Did you come get us?”

“No, but I told him I was going to tell on him.”

“Right…but when I came downstairs, did you tell me?”

More pausing. “Well, no…because I didn’t want to get in trouble.”

This means that she was definitely involved, egging him on if not actually touching the lighter.

“Have we told you several times in the last two weeks that you need to come tell us if he’s doing something dangerous?”

“Yes.”

“Was this dangerous?”

“Yes.”

“Did you know it was dangerous?”

“Yes.”

“Ok. From here on out, if you don’t come get us IMMEDIATELY when he’s doing something dangerous, you will get the EXACT same consequence he does.”

She was not happy about this. We talked about it further and she finally admitted that she didn’t come get us because she wanted to see what would happen, then realized that since she stood and watched (and laughed, which she knows is his cue to continue), she would also be in trouble.

This afternoon after school, they both had to write a two-page single-spaced paper on the dangers of playing with fire, when fires are appropriate/safe (with adult supervision) and what one should do when tempted to play with fire (or watch). We showed them pictures of people and pets who’d been burned and watched a video of a veteran who’d been burned during a training exercise.

Hopefully we’ve seen the last of playing with fire. We explained to they boy that if he’d simply asked (and waited instead of following his impulse) we could have looked up the proper way to make a Chinese floating lantern and then created some as a family this evening.

I explained to the boy that Hubby would have created a plan including:

  1. How to actually build the lantern
  2. How to use it SAFELY
  3. Backup plan in case things got out of control

and he admitted he didn’t have any of those three in place. We assured him that we don’t have a problem with his creativity, just the impulsive behavior and lack of safety.

Maybe later this weekend we’ll make some lanterns.

Good thing I told the grocer I wanted plastic instead of paper…if he’d been working with a paper bag, he might have burned the house down.

In all this, I’ve also learned a valuable lesson.

Just because it’s above his line of sight doesn’t mean he won’t find it. No more lighters on the fridge. In fact, I’m just going to move them all to the garage.

And on the bright side, I recently listened to (Daily Show host) Trevor Noah’s Born a Crime.

He actually burned a house down, and he still turned out okay.

I’ll just lean on that hope for the next 7.5 years…

If you have a chance, get the book on audio (Audible.com or your local library); read by the author, it’s an absolutely gripping memoir of his childhood during Apartheid. Hearing it straight from Trevor (yes, we’re now on a first-name basis, since I’ve listened to it three times) is perfect. In five words: funny, sad, triumphant, don’t miss. 

Boy Meets Osmosis, Part 1

Photo Credit: Immanuel Brändemo

Photo Credit: Immanuel Brandemo

 

Several times in the last few months, our boy has mentioned that he seems different from other kids his age. He feels they think in a different way than he does.

He isn’t wrong, since he’s on the Autism spectrum. If the DSM-V hadn’t changed everything (okay, not everything), he would be diagnosed as having Asperger’s. In fact, his earliest diagnosis listed him as an Aspie.

We have never told him, concerned that it might make him feel different, or that he might use it as an excuse. “Well, I just act that way because I have Autism.”

However, since he already feels “different,” we’ve been thinking that maybe we should tell him.

A couple weeks ago, the kids and I were watching Girl Meets World, a spinoff/sequel to my childhood favorite, Boy Meets World. In this particular episode, one of the characters had testing because the adults in his life suspected he might be on the spectrum. He was agitated and concerned over the idea that he might be Autistic. I didn’t really like the way they portrayed that part because the tone made a diagnosis sound a little scary. Test results showed the young man does not have Asperger’s and he seemed relieved. However, one of his close friends was disappointed because she is an Aspie and was hoping his diagnosis would make her feel less different. The show ended as the kids assured the girl that they all love her just the way she is.

Overall, the episode does a pretty good job of showing kids how to be inclusive. The portrayal of nervous tension about the testing, both for the parents and for the child, seems fairly accurate.

I wouldn’t really know, because we didn’t tell our boy we were getting him tested (yearly psychs are run of the mill here, so he didn’t even notice) and I was ECSTATIC to receive the diagnosis.

Still, I felt they could have done a better job of portraying the diagnosis as something less scary—or even cool, because truly, Spectrum Kids are gifted.

As the show closed, our boy stared me square in the eye and asked,

What do I have?

Not quite ready to have the conversation, I hedged. “What do you think you have?”

He thought for a minute, then said, “I think I have the illness of aaaaaaaaaaaa(thought he was going to say it)aaaaawesome!”

 

 

Continued

Beautiful Monkey-Butt

Today, I opened our son’s door to find a winter wonderland.

He’s been more impulsive of late; we aren’t sure yet what’s going on.

Last night at Boy Scouts, his sometimes-nemesis-sometimes-partner-in-crime asked for water. Our boy complied with the request by dumping water on the kid’s head.

When Hubby asked him why he thought it was a good idea, he shrugged.

I didn’t think it was a good idea. I just thought of it, so I did it.

Reasons for his choices remain elusive, apparently even to him.

“I wanted to do it at the time but now I see it was a bad choice,” or “I don’t know why I did it,” are frequent answers when we question him after the fact.

His befuddlement appears legitimate.

Since Dad passed away, wild swings of his behavior have become the norm. One moment, he’s explaining detailed reasons for the failure of a World War II campaign. The next, he’s walking from the kitchen to the living room to deposit orange peels behind the couch because the trash can (in the kitchen) was too far away.

After he gets in trouble, he’s almost perfect for hours and incredibly logical about accepting consequences for his behavior. He’ll work with diligent focus on math, chores, apology notes or other remedial requirements.

If only he’d act as though he’d been in trouble BEFORE getting in trouble, he’d almost never be in trouble.

So.

Back to the beautiful snowy landscape.

In his room.

I opened the bedroom door to deposit some of his belongings and stopped, sniffing in amazement.

My young man’s bedroom actually smelled…not like his bedroom usually stinks smells.

Then I turned on the light.

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The pictures don’t even begin to accurately portray the amount of powder on EVERY SURFACE of his room.

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This summer, before Scout camp, I bought him a container of Anti Monkey Butt powder (yes, it’s really a thing) as recommended by the troop leaders. It resided in the top drawer of his dresser for almost an entire year.

And then.

This morning, it called his name. 

He said he just wanted to see what everything would look like with powder all over it.

Thought it might be pretty.

Turns out, it definitely smelled pretty.

It was EVERYwhere.

I can imagine his delight as the plastic can puffed white flakes into the air. He probably danced through the clouds as they fell (a theory supported by the powder Hubby brushed off the kid’s shirt this morning).

As usual, he attempted no argument when I handed down the sentence: vacuum and wipe every surface, shake bedding over the porch rail, put all belongings in their proper places.

He even put the sheets back on his bed without asking me for help—and I didn’t even tell him to do that.

Unbelievable.

Tomorrow, his in-home counselor will help us try to work with him through his thought process. I’m just hoping we can find a solution, because right now it feels like every time we turn around it’s “something else.”

So far, most of his urges have led to largely harmless actions, but we just never know what he’s going to do next.

It’s like he’s suddenly five. Or maybe three.

He carries chunks of concrete into the bathroom, hides yogurt wrappers and banana peels in his room (doubly odd since we reinforce that he can have healthy food any time he wants it), climbs things, wanders off, misbehaves at school hoping for a suspension (because then he can come home) and basically does whatever pops into his head.

A friend told me that when his spectrum son edged into puberty, his Autism went from minor inconvenience to a full-blown life-alteration. We’re not sure if this regression is due to the Autism, due to the grief, due to a need for a change in medication, or…

We just don’t know. And it’s frustrating. 

But, on the bright side—the side to which I cling in desperation—the pattern of the powder was very pretty

And even better: his room no longer smells like a baboon’s derriere. 

 

Learning Not to Punch the Teacher

When your mom borned you, she took one look and threw you in the trash.

The classmate who delivered this charming nugget to my son probably had no idea how close he was to the truth. No concept of how deep his words would wound.

Afterward, we had a long talk about how it’s okay to want to punch someone but it’s not okay to actually put hands on someone. I am proud that even in the face of such soul-searing spite, our boy did not retaliate.

I suggested that he find a constructive way to deal with the painful feelings. Punch a pillow. Draw a picture. Write your feelings.

Tonight, I take my own advice.

Our son’s teacher vacillates between understanding and intolerant.

She is personally offended by his need to draw while she talks and doesn’t understand his Aspie idiosyncrasies.

But after Dad died, she gave our boy a lot of grace as he worked through the grief in the way all the articles predicted: a nosedive in school behavior and performance.

My emotions conflict often when dealing with her.

Today, I received a text.

I saw your son violently kick a student from another class. Please encourage him to behave appropriately in school.

The text bothered me.

If he “violently” kicked another child, I should have been picking him up from the principal’s office, not finding out after the fact.

This was followed by,

He didn’t eat his lunch today.

and

During the test today, he took a red pen and drew on his arms.

This last one, I’d already noticed, a fabulous red dragon tattoo. Although I’ve asked him not to draw on himself, I’m not that concerned about impermanent ink decorations. If he sneaks off to get a real tattoo, well, that’s a problem. No tattoos until you’re 25, when your brain has matured fully. That’s the rule. 

I responded, “Yes, I saw. Did he do anything right?”

She didn’t answer.

I added, “He mentioned that his friend showed him new shoes that change color and invited him to hit them with his foot. Was this the kicking incident?”

No response, then,

He asked permission to bring a cannonball and a bullet to school. He said you will help him bring the cannonball to school. Cannonballs and bullets are not allowed in school. Please discourage him from bringing these items to school.

Good grief. A family friend gave our little history buff several artifacts collected over the years. Our guy’s first response:

“We’re learning about this in history! I bet my teacher would love to see these!”

I told him that he couldn’t take them to school but that possibly I could get special permission to bring them in so the kids could see the display. Evidently he was too excited and brought it up to her.

This is the kid who smoked me in the “Jeopardy” category World Wars and corrected his teacher (accurately) when she taught about Pearl Harbor.

He’s really thrilled about history. Instead of encouraging that passion, she’s just annoyed.

My true difficulty with the situation is this:

I get it.

I understand fully that he requires ten times more direction than any other kid in class. He needs someone to help him see the connection between his actions and consequences (good or bad). He is frequently distracted by a buzzing light, a whispered word, a tapping foot or a bug doodling around the room. He doesn’t think through actions or words before he does or speaks.

I want to be on her side. I want to be a team.

Maybe the last two years (with fabulous teachers who recognized the diamond shine under the inches of behavioral coal dust) have spoiled me. We worked together to find solutions and they’ve offered advice for his current teacher. Those two years weren’t perfect and there’s no way to dream they were, no matter how flexible your imagination. But we worked together and tried each others’ ideas.

She discards ideas faster than I can suggest them.

Seriously, I just want us to work together to point this kid to success; the success I KNOW he can have. In a recent IEP meeting, his caseworker shook her head and said, “even with all his focusing struggles, he’s still keeping his grades up. I can’t believe it.”

I CAN believe it.

He’s brilliant. When he barely studies, he still passes (sometimes with 100s). With the right guidance and focus, he’ll be unstoppable.

Right now, though, she’s just telling him (and me) what he’s doing wrong. And that really gets me steamed. I have NO problem with consequences and the Assistant Principal can vouch that I lend full support to every intervention.

However.

He responds to consistent recognition of what he’s doing right. If he knows he’ll be consistently rewarded for doing the right thing, he generally does the right thing. I say generally, because he’s far from perfect (aren’t we all) and it doesn’t always work, but 8 out of 10 times, it does.

She says, “it’s too hard” to catch him doing well. She thinks it’s ridiculous to give him a “good” point for eating lunch (which the psychologist suggested as at least one guaranteed good point for the day). She argued against most of the interventions that everyone else (school counselor, head psychologist, principal, case worker, mother) agreed upon. She has 20+ other kids and doesn’t have time to devote to my kid. Just “thank God” when he’s quiet and ignore him.

I get it.

But this constant “tattling” (because that’s what the texts above felt like) is just wearing me out. Tomorrow I’m taking the conversation to show the principal, then asking what can be done.

The last time I asked, every other class was maxed out and there’s no possibility of moving him to another class.

Maybe there’s no solution other than,

“Hang in there.”

We’re in school for about four and a half more months. Almost an eternity, yet I know the time will dissipate like clouds puffing past a skydiver.

Fifth grade is not the end of the world. No one wants to know, “How were your marks in elementary school?” No one asks, “Were you ever sent to the principal’s office before middle school?” Maybe we just need to make it through.

In the meantime, though, Hubby takes me for walks and I write.

Tonight, as we trudged down the moon-drenched driveway, I said,

“I want to punch her in the face.”

This is not entirely accurate; I don’t actually want to punch her because then I’d have to deal with legal action (this is the forethought I hope to instill in our boy). However, I want to write about it, and thereby feel better. And so, with a tip of my hat to the best rhymer ever, I write.

 

For Teacher

I must not punch her in the face

Though maybe just a spray of mace

Just a smidge, only a sample

No, I must be an example

Must not, must not kick her knee

Shall not, will not put a bee

In her coffee piping hot

Flick her? No.—NO! I cannot.

 

When I am so mad…I’ll write!

Get some extra sleep tonight.

Go for long walks down the drive.

In her car hide a beehive.

Oh, wait, that last one is wrong;

Instead I’ll sing out a song

Whisper a soft little prayer

That she will lose all her hair.

 

Oh, no, there I go again.

Paying vengeance is a sin

I must let it go, be done

Show forgiveness for my son

That boy’s always watching me

And I so want him to see:

 

Great achievement’s possible

Mercy is unstoppable

Even on the hardest day

Grace and faith will make a way.

 

There.  I feel better.

And bonus, I’m not going to jail for punching a teacher. So, there’s that.

When life just isn’t fair, how do you deal with it?

 

 

 

 

 

Well That’s FantIstic

I perched on a cold plastic chair, waiting my turn for a haircut, when he sauntered through the door, tall and confident.

Ex-military was my first guess. Who else shows up to a hair salon with quarter-inch hair?

I couldn’t tear my eyes away from his broad chest. No question in my mind…definitely military. Eyes riveted, I nudged Hubby.

“Can I get one like that?”

He nodded. “Sure, why not?”

He’s so accommodating.

Then I asked the guy where he got his t-shirt, sporting a NATO/Military alphabet message.

And dissolved into giggles.

 

After I regained my composure, Hubby and I began deciphering the cipher.

  • Whoa, That’s Fascinating
  • We’re Totally Fabulous
  • Why Tell Fibs?
  • What Terrific Fannies

And yes, I know the phrase really means something less than appropriate, so I’ll probably never wear it…but it still just tickles me every time I see it.

My favorite:

Well, THAT’S Fantastic.

(With just a hint of sarcasm.)

***

Yesterday, as I helped our son with his homework, I pointed out a needed correction. He burst into tears. Unsure of the source (since the mistake was incredibly minor), I began to wrap my arms around him.

He pushed my arms away. Not harsh, but definitely firm.

“I just want to be aloooooooooooooooooooooooooooooooooooooooone,” he wailed, exploding out of his seat at the kitchen table.

Whiskey Tango Foxtrot???

His moodiness is an on-again, off-again occurrence in the afternoons. He takes medication to help him focus at school, and to this point I’ve always assumed it stems from the meds wearing off. But before, I’ve always seen an obvious trigger (usually after a rough school day).

This was my first epiphany that the reaction might not be related to his dose.

(For more about the use of medication, read here.)

“Okay…I won’t hug you. How about you just lean against me until you calm down?”

Arms folded, he propped his back against my side.

Once his breathing returned to normal, I said, “Tell me what you’re thinking.”

“I’m just TIRED of all the crammed-up PEOPLE at school! People EVERYWHERE! Everybody smashed together.” He pressed his palms together as though squishing play-doh. “Too. MANY. PEOPLE.”

His breathing hitched and started getting out of control again. I put my hand on his shoulder, light in case he wasn’t ready. He didn’t brush it away.

“I’m sorry you’re feeling overwhelmed. Here’s the good news: you had a day full of crammed-up people, and STILL you got NINE green marks from your teacher. How great is that? It means you worked really hard not to freak out at school. Super job!”

He didn’t respond, but picked up a piece of notebook paper and a pencil and pulled out a chair opposite me.

“I know being around a lot of people and noise can be tough, but I have to tell you: especially in the last few weeks, Daddy and I can tell you are working very hard to deal with it. We are so proud of you.”

Sniff, sigh. 

I waited a few moments, then looked over at the paper. He was rewriting the problem, this time sans mistake.

Once finished, he looked up at me with no more apparent angst.

“Thanks for always helping me. You’re a really good mom.”

***

If you’ve been part of the Hypervigilant community for a while, you may already know about his recent Autism Spectrum Disorder diagnosis. (If not, there’s the link.)

ASD explains a lot (Asperger’s, now considered part of the ASD spectrum instead of a separate diagnosis, is where our guy lands).

While we’re not letting the diagnosis be an excuse for behaviors that are outstandingly inappropriate (in fact, we haven’t told him), it supports our earlier suspicions that sometimes, “there are just

Too Many People”

and his sensory intake ability is overloaded.

We need to be sensitive and willing to accommodate.

Consider yesterday’s situation.

Assuming belligerence (which is how it appears sometimes), his pushing me away seems angry and rude. If I react with a consequence for being rude, he feels misunderstood, which escalates his reaction.

Understanding Autism, we realize that sometimes he’s overwhelmed and needs a minute. Allowing him to control the interaction and physical connection, while not letting him escape to his room, gives him the opportunity to grow socially.

If he seemed out of control emotionally, I probably would have given him the option of a cool-down in his dark, quiet room (door open), with a definite re-connection afterwards. We’ve done that before.

But he won’t always be able to flee overwhelming situations, and the best place for him to learn to self-regulate without running away is at home.

He’s a fantastic kid. Smart, artistic and musical. Really amazing. (And if you have any questions about World War II aircraft or ships, he’s got you covered.)

So I’m rethinking this whole WTF thing.

Fantastic + Autistic = FantIstic

Wow, That’s FantIstic. 

Maybe I’ll get that t-shirt, after all.

 

 

 

Diagnosis Redemption

Climb High

Climb High Photo Credit: Casey Alexander

 

When our children came to live with us, we learned about despair. Loss. Grief.

Theirs, not ours.

Our son, then five, woke up screaming between 3 and 4 am. Every morning.

I dragged my laptop (and myself) into his room each time, sending email and running searches. As long as I sat in the room—near the bed but not touching him—with lights on, he slept. Or appeared to sleep; if I left my assigned location, he screamed again.

We couldn’t touch him.

The rare exception was during the screaming fits, when he clung to me like an underfed, sleep-deprived monkey.

He never looked anyone directly in the eye.

He scooted himself underneath any cave-like spot. At our church, they learned to leave him there until he came out on his own. A children’s church volunteer sported a nasty shin-bruise after getting too close.

His first reaction when feeling threatened: lash out, duck under or climb high.

Boy, could that kid climb. High and fast. Still can, actually.

No bad people can get you if you’re thirty feet up a tree. 

He couldn’t wear any clothing with texture. Soft cotton, no tags. Couldn’t eat mashed potatoes without gagging. Anything soft or mushy? No way.

I told the social worker about my concerns. Could this be Autism?

If you’ve read many of my earlier posts, you probably know…our SW was a real gem. (Yes, that’s sarcasm.) She suggested that if we couldn’t handle the children’s issues, social services would kindly remove them from our care.

Threats of removal were, in fact, her only response to my requests that our situation be evaluated for additional training and support as a Therapeutic Foster Home.

At five, he knew only a few letters of the alphabet and exhibited delays in speech and gross motor skills. I contacted the local Children’s hospital about therapy. Ah, the waiting list.

He was so afraid of the other children in his Kindergarten class. Unfortunately, when threatened, his stunted social ability limited him to only a few options: fists, feet and head.

Finally, after six months of driving to the school almost every day to sit in his classroom (the Principal allowed me to stay, considering our situation), the SW approved psychological testing.

This concession came only after multiple attacks on other children in his class and several foiled attempts to escape the school caused the principal to recommend he attend only half-days.

The doctor spent about 45 minutes with him and pronounced his diagnosis as ADHD.

I listed the issues we’d seen in the last six months. “Do you think he could be on the spectrum?”

Nope.

Just traumatized. He’ll be fine in a few months. 

Finally, spots opened up in speech and occupational therapy. The therapists agreed with me. ADHD might be part of the problem, but wasn’t the whole story.

A few months before the adoption finalized (and over a year after they came to live with us), I received their full history.

He spoke about ten words when he was three years old. Most of his communication was nonverbal. His behavior was out of control. No one could work with him. 

For the next four years, every moment became therapy. We worked on speech, motor skills, interacting with others.

During the school year, they attended our local elementary school (with an IEP). He spent part of his day in the Special Education program. In summer, I homeschooled the two of them, reviewing previous learning and adding more skills. We took time for play and breaks, but most days they spent at least an hour on math and reading.

Beginning second grade, he read on a Kindergarten level. He won a book during our library’s reading program, The Family Secret. I knew the reading level was far beyond him, but the graphic novel nature of the book fascinated him. He became obsessed with the World Wars.

At my aunt and uncle’s house, he discovered war documentaries, mostly in black and white. His obsession expanded to include almost any war. In the bookstore, he begged for coffee-table size books about conflicts in Vietnam and Korea.

And his reading ability exploded. Now in 4th grade, his reading level borders between 5th and 6th grade. He draws elaborate representations of planes, ships and tanks. His attention to detail is unbelievable.

He hears music in his head and recently discovered Beethoven. He’s asking for piano lessons this summer, specifically so he can learn to play the 5th. My mom gave us a set of classical CDs; he vacillates between Tchaikovsky,  Schubert and Bach during the day. At bedtime, it has to be Beethoven. And if someone is rude enough to talk during the first movement, we get a rewound encore.

But his social skills are still far behind what they should be. He doesn’t “get” why certain things are inappropriate. He still can’t choke down certain foods or wear irritating clothing.

Once again, I asked his counselor.

Could he be on the Autism Spectrum?

And this counselor, too, who sees him once every two weeks for forty minutes, said, “I think he’s just OCD. And maybe a little eccentric.”

Right. Because “eccentric” is a word we use for nine year old boys. 

Finally, I talked him into psych testing. I am not a professional, but I live with the kid. If he’s not ASD, I’m crazy. (Which is likely still the case…)

After the first part, I met with the counselor.

He appeared a bit gobsmacked.

I don’t want to jump the gun, but it appears he could possibly be on the spectrum, based on preliminary testing.

No, really?

A second round, including feedback from his teachers. I asked him to call me with the results.

His secretary called instead; I think he’s mad at me. She was hesitant.

So, his tests show that your son has ADHD.

I almost laughed out loud in frustration.

And he has Autism. 

THANK. GOD.

Finally, a diagnosis.

I AM THRILLED.

Now, some of you may question my sanity. Several of my friends have ASD kids and aren’t very happy about the problems ASD brings.

However, for the last several years, I’ve been working more or less alone (as far as therapists and counselors), coaxing therapists into doing things that help kids with Autism even though “he’s not Autistic.”

Finding ways to help him learn.

Explaining to people that he “needs a little extra” when it comes to understanding others—especially other children.

PLEASE: Don’t corner him. Don’t force him. Don’t scare him. Don’t misunderstand him.

Last summer, he went to a basketball day camp and spent most of the week on the bench (I found out after the fact; he wasn’t forthcoming because he thought he’d be in trouble for acting out). They didn’t give him space to calm himself when he was agitated, which meant he ended up acting crazy.

They saw his ramped-up reactions as misbehavior, when he was just scared and overstimulated. Not their fault either; they’re not trained for special needs. But if we’d had a diagnosis, it might have changed their perception of his actions.

This summer, with the diagnosis, he qualifies to attend a camp for kids on the spectrum, with counselors trained to help him have the most fun possible. If he needs a minute, he can have a minute. No benching. SO. COOL.

And yes, I feel a little bit “told ya so.” I want to call that (no longer working) social worker and give her a piece of my mind.

Sure, lady, he’s just fine. He needs no special accommodations. It’s all in my head. I’m just being hypervigilant. 

And when it comes to my kids, I’ll be hypervigilant to my dying day.

Because after the start they had, they need all the help they can get.

And Hubby and I plan to make that happen.

We can’t wait to see how high he climbs.

 

 

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