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.
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.
Photo by Peter Nijenhuis
**We’re up to $35; see below!
We’ve all seen (and occasionally participated in) a Meet & Greet post. You know, “drop your link in the comments and maybe someone will click.”
Instead of posting a hit-or-miss link, let’s change it up. Your mission, should you choose to accept it:
1. Describe your blog in nine words or less.
2. Paste a link to a post you’re proud of writing. Bonus points for adoption, mental health or parenting themes*, but it can be anything.
*With your link, please note the post theme, e.g., “Adoption,” “Mental Health,” “Parenting,” “My Happy Place,” “Honey Badgers are Misunderstood,” etc.
3. Reblog this to increase the number of participants. For every comment below, I’ll donate a dollar* to Compassion International, a fabulous organization committed to child development and rescuing kids from poverty.
*If the comment number rises beyond my ability to personally donate, I commit to raising the money.