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.
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
Then I turned on the light.
The pictures don’t even begin to accurately portray the amount of powder on EVERY SURFACE of his room.
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.
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.
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.
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?”
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.
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.
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.