Related to: Put on Your Armor, Part 1 and Part 2
Several times, now, I’ve “diagnosed” our children in the face of therapists who disagree…only to have a psychological evaluation support my assertion six months (or more) later.
This is not because I’m more intelligent or have higher qualifications.
I don’t point this out to brag.
There is a reason it happened:
NO ONE can be an expert on EVERYTHING.
Every therapist has specialties.
If you’ve been part of the Hypervigilant community for more than a year, you may have wondered why I sometimes write yet another “we have a diagnosis!” post. Since he came to live with us, I’ve asserted our boy is on the Autism spectrum. And every time a professional confirms Autism, a different therapist disagrees the following year.
Some people don’t want their kids “labeled,” but in our case, what I call a diagnosis-in-writing helps us obtain needed services. (A number of therapists agree, “yes, I see those traits, but I’m not ready to put the diagnosis in writing”)
In search of someone who could finally help him, we bounced through the counseling community for six years. When the yearly psych came due, his counselor du jour completed the process.
At the time, utilizing the counselor most familiar with his current behaviors seemed logical, but not all of them were adept. In some cases, he refused to complete questions or gave answers he thought they wanted to hear.
His fluctuations in participation, combined with the wide array of specific spheres of knowledge, created anomalies in his diagnoses.
In January, a psychologist at the residential center completed a psychological for our son. Her field of expertise is ADHD. Almost all of her recommendations centered around mitigating ADHD symptoms. She did not address any of our concerns about Autism, ODD or social behavior, nor did she delve into factors impacting his aggression level.
I requested (okay, demanded) the center pay for a new psych evaluation with a different individual (since insurance wouldn’t pay for another). They declined to provide a full workup but agreed to a specialist performing certain specific testing.
Here’s what I never realized until now: we needed a TESTING expert.
The individual who performed the second battery does not provide counseling, therapy or psychological services of any kind. He only handles TESTING.
Our son’s session with the tester ended up fielding even better results than I’d hoped and I learned a valuable lesson in the process:
For therapy, turn to a licensed therapist or counselor. For medication, seek a psychiatrist. For accurate test results, consult a testing specialist.
But I digress. My point here is that no professional will ever have full command of every possible issue. Have you seen the DSM-V? It’s a chunky little book. And some of the diagnoses it contains are the sole focus of entire Ph.D. degrees.
When it comes to the kids in our homes, it is OUR responsibility to be the expert.
Children who’ve experienced trauma are each unique, but parallels appear in symptoms and behaviors across the group.
Unless your counselor is well-versed in results of a traumatic beginning, you will likely be your child’s best advocate.
If you live with a child, you know the child better than the “professional” ever could.
Don’t allow fear of being wrong or less qualified stop you from speaking up about concerns.
The most important part of being a child’s advocate is preparation. We need to put in the time to learn and to research.
With this in mind, in the next few weeks I’ll be posting resources to help kids who’ve had tough beginnings.
2 Timothy 3:16-17 encourages study of the Bible, so that we can be “thoroughly equipped for every good work.” While not specific to kids who’ve experienced trauma, it’s a great resource for finding hope and fighting fear, both integral to healing.
The idea also applies to studying on behalf of our kids. The more we know about needs and behaviors related to trauma, the better equipped we are to help them and to fight for them.
Let’s get out there and do GOOD WORK.
I don’t put much stock in dream interpretation, but every so often, I learn something new while unconscious.
One Christmas morning, my sister announced she would like to speak, then made a statement I couldn’t understand.
My brother said he would like to clarify. What he said made no sense to me, and didn’t seem to have anything to do with what my sister said.
Several other family members chimed in.
They acted as though they were having a conversation, appearing to understand each other.
By the time my mother spoke up, I was thoroughly confused.
Finally, I noticed each was reading from “speaking parts” written on sticky notes. My sister informed me the lines for their “Christmas play” were the things I said in my sleep on Christmas Eve.
“You woke me with your gibberish,” she grinned, “so I wrote down everything you said.”
Over the years, I’ve found that I don’t always recognize when I’m stressed. The most accurate indicator that I am not relaxed is what happens while I snooze. (Apparently, our family together at Christmas is a stressor.)
If I talk in my sleep, and especially if I walk in my sleep, I am overwrought and need to take time to figure out
1. what is stressing me and
2. how to ameliorate the situation.
Once, soon after starting a new job, I woke to find myself scrubbing at a corner of the carpet in our bedroom.
Hubby flipped on a light. “Uh…what are you doing? It’s 4 a.m.”
Frustrated, I fumed, “I can’t believe the chef dumped this whole #10 can of crushed tomatoes! I’ll never get it out of this carpet.”
As Hubby snickered, reality filtered through my dream and I realized I was scrubbing at nothing.
The new job was exciting, but even happy stress is still…stress.
This morning, Hubby asked,
soooooo, a grilled cheese is your favorite sandwich?
“Well, not really. I like a Reuben much better. Why do you…wait. Was I talking in my sleep?”
He nodded, grinning.
“You REALLY like grilled cheese. You told me several times.”
Maybe I’m a little stressed.
We are trying to figure out a better option for our son because the current residential treatment setting is not working well for him. His behavior is deteriorating, and instead of implementing behavior modification, almost everyone at the center simply wants to focus on his feelings.
“He’s just expressing his anger. If peers do things that make him mad, that’s really not his fault.”
I’ve heard this from more than one staff member.
“We’ll just keep processing his feelings and things will get better.”
This may work for some kids, but with a diagnosis of Autism One (Asperger’s), it’s not working for him. He needs concrete positive and negative consequences for his actions.
And regardless of whether he’s provoked, his REACTION is his responsibility.
I talked with a number of other centers this week. Anything close doesn’t seem to be a fit. The few that seem to be a possibility are far away. Finding the right place for him feels almost impossible.
Thanks to my sleep talking, I realized today that I am definitely over-stressed about the situation and need to take a step back.
I know that God loves our boy even more than we do and He’s got a good plan for that kid.
I need to continue to trust. This will work out eventually.
While I take a minute to refocus, I think I’m going to make myself a grilled cheese sandwich.
(I just found out this morning: grilled cheese is my favorite.)
“I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.“
Continued from Excruciating Ride
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.
“These shutters are a lot more work than I expected,” I sigh. “Thanks for helping me.”
I agreed to paint shutters for a friend. Too late, I discovered they hadn’t been properly prepped before the previous owner covered them in enamel; it flaked off like autumn leaves but gummed up my sander. The only option was tedious scraping.
The paint only held fast where edges met, the hardest part to clean…on every slat.
A five-hour job ballooned into a week-long project. The only saving grace? The lead paint test was negative.
My ten year old son shrugs, scraping an edge.
“If they’re so hard, why don’t you just take them back and say you can’t do it?”
“Because I agreed to paint them. I didn’t say I’d only paint them if they were easy to prep.”
He flicks a piece of peeling paint. “But this is too hard. It’s not what you expected. You should give up. That’s what I’d do.”
After the week he had at school, I think maybe we aren’t talking about the shutters.
Watching black paint chips flutter to the ground like an apocalyptic snowfall, I shake my head.
“Nope. I said I’d paint them. I gave my word. That’s a promise, and I keep my promises.”
“But it’s too hard!” He shakes his little brass scraper in my direction.
“It’s not TOO hard. It’s difficult, yes, and more work than I expected, but I’m going to have a really good feeling when I’m done.
Often, when you work through something difficult, you find out that YOU are tougher than you expected yourself to be.
There will be lots of times in your life when things will seem harder than you expected, but when you finally have a great result, you’ll know the hard work was worth every moment.”
He pauses, thinking.
“That’s why you’ll never get rid of me, even when I’m bad?”
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.
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.
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.
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.
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!”
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.
Dear Miss Othmar,
You are about to become the third most important person in my son’s life.
You will spend more waking hours with him for the next nine months than his dad or I.
Your encouragement, understanding, creativity and enthusiasm for learning will impact my son’s life forever.
My son is intelligent, wise beyond his years, interested in learning about almost everything and unbelievably creative. One-on-one conversations with him will leave you amazed at the depth of his thoughts.
If you connect with him, if you play to his strengths, if you feed his love of science, math and reading, you will find he’s your most dedicated student. He will be your most loyal supporter. Your truest pupil.
His ADHD, high-functioning Autism (what used to be called Asperger’s) and traumatic background sometimes interfere with his ability to show others who he really is.
He hears every little tick, hum and buzz in the building as though it’s right behind his ear. The fly most kids easily ignore will capture his attention like a tractor beam.
Transitions may leave him confused. Keeping himself organized is an almost insurmountable task. Writing assignments in a planner takes him much longer than other kids, thanks to his sensory and motor difficulties.
Attempts to connect with his peers sometimes leave him reeling.
He craves—but doesn’t always understand the best way to procure—acceptance. He thinks making kids laugh is the same as being liked, which means he may act out to get a giggle.
Perceived unfairness blows his mind; he has difficulty ratcheting his emotions back if he finds himself or others being treated in a way that “does not compute.”
In an environment where he feels secure, encouraged and safe, many of these quirks minimize naturally.
Here are some suggestions for a smooth ride this year:
Be firm, fair and calm.
If he freaks out, give him a minute to calm down in a quiet space. Ask him how the situation could have been different—and what he can do in the future to avoid the situation.
Give him advance notice for transitions. “Five minutes until we leave for lunch. Have you finished your paper? What do you need to do next to get ready?“
Find creative ways to get him involved. Ask him to master a concept so he can help teach someone else.
Notice his interactions with others. Feel free to “interfere,” to take him aside and make recommendations for relating.
When his attention wanes, stand by his desk, tap his page, put a hand on his shoulder…small connections to bring him back to earth.
Encourage him to take notes and write down his assignments, but please text me a picture of the assignment board.
Be firm, fair and calm. (This is really the most important.)
I am so thankful for your dedication to a wonderful education experience for all the kids in your class. I fully understand that you don’t have extra time to dedicate to “special” behavioral needs.
One last however:
With this kid, an ounce of prevention truly is worth a pound of cure. If you can find a few extra minutes to pour in at the outset, the rest of your year—and his—will benefit. If you make a connection with him, he’ll be motivated to make you proud.
Thank you again, in advance, for everything.