I’m sitting next to a family.
Two parents with three most-likely-bio sons. I watch the oldest roll his eyes as the youngest runs around the cafe, repeating with gusto,
“I spy with my little eye…”
The middle boy colors quietly by himself.
I don’t know the names of the older boys.
The youngest is definitely named Liam.
Father and mother halfheartedly chase the towheaded toddler in turns, calling his name.
He expertly ignores, then evades them.
It is a blissful scene of family togetherness, childhood glee and parental exasperation.
Sometimes I watch other people with their children, heart aching.
I am not the woman who gave my children life.
Every so often, I wonder whether things would be different if I’d held them in my arms from birth.
a few days ago
I saw a lady watching as my daughter and I walked through the store
arms wrapped around each others’ shoulders
being our goofy selves
The woman’s eyes sparkled with tears.
I wondered about her story.
And it hit me.
We all watch each other.
Grieving our personal losses.
Assuming others have a better, happier life.
She has no idea of the depths of hell from which my girl and I have fought our way back to be mother and daughter.
She can’t imagine the years of despairing whether we’d ever have a relationship.
I reconsider some of my wishing.
Maybe Liam’s family lets him have run of the place because he’s recently had his third round of chemo and they don’t know if it will work. Maybe they seem happy together because it might be the last time.
None of us has any idea what the others’ lives are like, and yet, we wish.
A few weeks ago, I talked with a friend I’ve always seen as the epitome of happy and positive. We lost touch after college for over fifteen years. Three minutes into the phone call, our friendship was all caught up. She’s the same sunny girl.
Five minutes in, we’d spilled our guts.
Our adoption journey. Their many miscarriages.
Everyone has a difficult patch in life to overcome.
We all have our own battles, and none of us really knows what others endure.
I’m a born advocate; when I read Isaiah 1:17, Proverbs 31:8 and and Isaiah 58:6-11, I feel they were written to me personally.
17 Learn to do right; seek justice.
Defend the oppressed.
Take up the cause of the fatherless;
plead the case of the widow.
8 Speak up for those who can’t speak for themselves.
Speak up for the rights of all those who are poor.
I can fight for what others (e.g., my kids) need all day long. But if I’m honest, miscarriages would utterly destroy me. God knew what I could handle.
God knew beforehand this was going to be my life, so I’m fully prepped to fight, love and pray my way through the hard times.
Maybe I just need to focus a little more on being thankful I’m equipped for this life, instead of wishing for someone else’s battle.
Isaiah 58:6-11, NIRV
Set free those who are held by chains without any reason.
Untie the ropes that hold people as slaves.
Set free those who are crushed.
Break every evil chain.
Share your food with hungry people.
Provide homeless people with a place to stay.
Give naked people clothes to wear.
Provide for the needs of your own family.
Then the light of my blessing will shine on you like the rising sun.
I will heal you quickly.
I will march out ahead of you.
And my glory will follow behind you and guard you.
That’s because I always do what is right.
You will call out to me for help.
And I will answer you.
You will cry out.
And I will say, ‘Here I am.’
Get rid of the chains you use to hold others down.
Stop pointing your finger at others as if they had done something wrong.
Stop saying harmful things about them.
Work hard to feed hungry people.
Satisfy the needs of those who are crushed.
Then my blessing will light up your darkness.
And the night of your suffering will become as bright as the noonday sun.
I will always guide you.
I will satisfy your needs in a land baked by the sun.
I will make you stronger.
You will be like a garden that has plenty of water.
You will be like a spring whose water never runs dry.
Continued from Desolate
When the kids first came to live with us, I clocked three to four hours of sleep a night. The girl wailed until after midnight; the boy woke screaming around in the wee hours.
Every. Single. Day.
The initial sleep deprivation lasted about six months; four months for social services (still the legal guardian) to approve meds and two more months for the doctor to find the correct dose.
I still remember the relief I felt the first morning after we found the right combination, waking around 6 instead of 4 am.
I’d forgotten how it felt. September brought it all rushing back.
This time, I think, was worse.
Digressing a bit: I’ve had a recent epiphany that I experienced almost no change in stamina from the time I was seventeen. Until now.
Sometime this year, I looked in the mirror and realized I am no longer twenty-seven. Or thirty-seven, for that matter. Am I too old for a ponytail?
Apparently, up to this point my brain has been convinced I’m a decade younger, and the shock of realizing I am OH NO middle-aged was a bit too much.
This time, sleep deprivation almost killed me.
Ok, that’s hyperbole.
But I was beyond exhausted. By the end of September, I started telling Hubby I might like a weekend in the acute center, if they actually had white padded rooms available. 48 hours sleeping in a soundproof room…sounds like heaven.
Unfortunately, checking myself in at one of those places wasn’t an actual option. Hubby took over on weekends and let me nap as much as possible while he was home.
Finally, after weeks of phone calls and meetings and waiting, we got the approval call from the treatment center.
Because we were concerned about what our son might do if we informed him ahead of time, I packed him a suitcase during the night. I crept into his room and slipped his stuffed dog from under his arm. The next day, as we drove to the treatment facility, we explained.
We are not counselors or psychiatrists; we have researched and prepared as much as possible, but we are not trained to provide the care you need.
We care very much about you and want to give you the best chance to succeed in life. The people at this facility have the qualifications to help you.
We are NOT giving you up, letting you go, abandoning you or sending you away.
Our son responded with little emotion.
Like I said before, you’ve tried everything. We might as well try this.
His absolute lack of reaction still stymies me.
The experience at this treatment center was a complete change from the acute center. We met the director, head nurse and several staff. While the nurse completed the intake with our son, we toured the facility.
The staff explained to our son that the initial stay would be thirty days; he perked up and I watched determination firm his jaw.
At the time, we didn’t realize this would become a problem.
He thought if he could “act good” for thirty days, they’d release him. And he decided to make it happen.
He hugged us goodbye without a tear, then walked through the metal door with a staff member. It closed behind him with a heavy thud.
We walked to the car.
I expected to feel guilt at leaving him with strangers.
I expected to feel great sadness at leaving him behind. For almost seven years, we’d been four. Now, at least temporarily, we were three.
I expected to feel lonely, to feel his absence, to experience a boy-shaped hole in my existence.
I expected to feel that I was a failure as a mother, having not been enough to help him.
But here I must admit: I felt nothing but relief.
I truly believed the people in that building would be able to help him in a way Hubby and I could not. I knew we weren’t leaving him permanently; we would, soon enough, once again be four. I understood that I’d exhausted every possibility available, turned over every proverbial stone.
As for missing him—maybe this sounds awful, but…I didn’t.
My only source of guilt: the relief at being able to relax.
No checking every thirty seconds. No worrying whether he’d wake before I did. No concern about destruction or harm to property or living creature (including his sister) if my visit to the loo lasted an extra minute.
The first three days after drop off, I slept like the dead.
A week later, Hubby looked ten years younger.
And the nurse called to tell me our son was the best behaved child in the center.
He is so polite. He is kind to everyone. I wish they were all just like your son.
I was gobsmacked. Flabbergasted. Shocked.
How could this be the same child?
Until now, I’d never realized how determined he could be.
Guess how long that dogged kid kept it up.
Continued from Excruciating Ride, Part 2
If you asked for a one-word description of my internal landscape during early fall, I would use the word desolate.
Desolate, synonyms: miserable, despondent, depressed, disconsolate, devastated, despairing, inconsolable, broken-hearted, grief-stricken, crushed, bereft
Dark storms on the horizon and a long, lonely road ahead.
His six-day stint in acute psychiatric care only seemed to magnify his behaviors. He literally came home worse than when he left. Although he fed us lies about some aspects, we observed serious lack of supervision in the acute facility. He came home with a softball-sized bruise on his arm from playing a “punching game.” Roll the dice, the other kids punch you. Granted, there’s a good chance he willingly participated, but there’s no reasonable explanation for kids getting away with that kind of assault under true supervision.
He hid his shoes in the gym and blamed another child (we found out after); they still hadn’t found the shoes when we came to pick him up, so they led him outside in stocking feet. The nurse couldn’t fathom why we were upset. It never occurred to anyone that perhaps a pair of flip-flops (or a call home so we could bring shoes) might be necessary.
Peripheral concerns like these made us more concerned about the true level of care and supervision at the center. We began to hear stories from other families whose children had bad experiences and became determined to keep him safe at home until we could find a better solution.
I slept about 4 hours a night, making sure he was sound asleep before I went to bed and waking before he stirred. Thankfully, Hubby made it possible for me to stay home starting mid-summer (as we were planning to homeschool). I don’t know how I’d have survived trying to work as well as fully supervise the boy.
We instructed the girl to stay out of his way as much as possible. It was now early September, so each day included school work; he generally complied with the intent of “beating” his sister. Normally I discourage competition, but in this case it kept him focused so I didn’t fight it. Surviving the day was my only goal.
After schoolwork completion and some time in the yard to run around (and outside the fifteen hours of time per week with the in-home counselor, psychiatrist and office-visit counselor), I allowed him to play with Legos or let the two kids watch movies (a complete anomaly; our normal TV schedule included almost no screen time other than a Friday night movie). The only time I could guarantee no violence were the minutes his eyes were glued to the “bug light.”
Meanwhile, I spent hours on the phone with our insurance company, the social workers, a county government team and his in-home counselor. I called and researched longer-term psychiatric facilities within 6 hours of our home. Most wouldn’t take him as they were not considered locked facilities. They couldn’t protect other children from him, and they couldn’t prevent him from running away or hurting himself.
I prayed we could find a place for him; Hubby and I were completely exhausted. He took over much of the supervision in the evening so I could get a shower and make dinner, which meant he was basically working two jobs.
Finally, I found a facility within reasonable driving distance. As I researched further, I found that the original trauma counselor who saw our family in the beginning of our journey wrote the program for the facility and continued to consult with them. They utilized Trauma-Focused Cognitive Behavioral Therapy, something we’d been advised to pursue.
Every conversation gave us more certainty this would be our best option.
“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,