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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. 

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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