Monthly Archives: February 2018

Radio Silence

Dear Reader,

I just can’t post much here, currently.

It’s a struggle, which you already know if you’ve been following the sporadic posts of late.

I’m still living and thinking and hearing all the news from Jack’s world. But my thought processes are not very uplifting at this point in time. Things are hard and emotional, for no particular reason. Just all the million ongoing reasons.

I posted on Instagram last night about being exhausted and LOATHING (the actual word I used) special-needs parenting. Then I took it down early the next morning because it seemed too drastically honest and *not positive.*

If I have a “brand,” it’s probably something like “Whoa! Check out this bonkers life defined entirely by special-needs parenting. Also, trust Jesus.” And if indeed that is my brand, I don’t know how to move forward in it.

I still trust Jesus. I’m still parenting kids with special-needs. But I am in a dark place, hedged up by weariness, emotional fatigue, PTSD, my kids’ neuroses, and Jack’s omnipresent behavior issues (which are at a distance now, but are still just as real, pressing, and consequence-filled).

I lie awake for an hour or more every morning around 3:00 am. It’s as though this is the only time in a 24 hour period when I am still enough for all my worries to sneak up and catch me unawares. And my hip and glutes hurt from all the physical therapy I’m doing in an effort to stop my back from hurting. I guess you could say I’m consumed by emotional and physical pain in my early-morning mind-churning sessions.

I’m filled with rage at the ongoing battles between me and kids whose autism-born rigidity is controlling my life. I’m frustrated at the messes and the belligerence and the executive functioning deficits which result in every jacket, coat, scooter, backpack, toy, and pair of shoes being lost. Always.

I’m tired of being the recipient of all of my children’s angst when things in their lives don’t match their inner expectations.

Maybe this makes me selfish. I don’t feel inspired or filled with wisdom from these experiences.

I feel weighed down, gray, flat, and irritable.

And this, Reader, is why I’m not saying much here.

Cheers, friends,


Being Okay With Just Being

Something I have learned from being Jack’s mother is this: be present in the moment. Just be there and be okay with it.

This is one of those cliched bits of advice that I would probably tune out if someone posted it along with a beautiful photo on Instagram.

But honestly, it took me years and years of struggle to reach a point of understanding with this principle, upon which so much of my happiness now rests.

When Jack was little and neither of us knew how to manage life together, I spent many an afternoon wishing for some (any!) escape from the clamped down restrictiveness of life with a child who screamed and dismantled things everywhere we went, to the point that we no longer went anywhere. By 4:00 pm every day, Jack and I were both in a state of panic. The walls were closing in on us. There was no one who could help. Days lasted eons. I prayed, during these times, for rescue. From anyone. Any source. My prayers were like those of someone in intense pain, praying for relief in any form. “Heavenly Father, send help. Any help. Please help.”

I’d give Jack 3 baths a day, simply to give us both a moment to breathe. He loved being naked and splashing. It was a sensory playland for him, and a few minutes of rest for me. I would sit on the floor in the hall across from the boys’ bathroom and watch Jack play in the tub. In these moments, when I wasn’t actively chasing, intercepting, carrying, or placating an upset and/or destructive Jack, my thoughts floated around the uncomfortable realization that I didn’t know what to do for Jack. All my efforts ended in zero change.

Of course, with time I’ve come to see that no one has the solutions to our Jack conundrum. Experts, professionals, MD’s, PhD’s, SLP’s, OT’s, and BCBA’s have all tried admirably to give helpful recommendations for Jack, which have historically resulted in limited success.

This is because we are outliers.

Jack is the most severely disabled of the spectrum of behaviorally-challenged individuals.

His aggression is the worst his various school principals have ever seen, which is a really fun thing to be told.

Medications have little effect on him.

Ditto for behavior plans.

Well, let me amend that. With complete focus (i.e., one-on-one staffing at all times, with new and exciting/yet not overwhelming activities changing every 5-10 minutes), Jack can have reduced aggressive behaviors and greater compliance with requests.

You guys, while Jack is nonverbal and mentally delayed, he’s not stupid. He knows what he wants. He knows his frustrations. He knows when people are frustrated by him or fear his outbursts.

Now that he lives far away in a group home, the same issues continue. The difference is that he has full-time caregivers and the results of Jack’s behaviors aren’t bouncing back at me nonstop. The fallout of Jack’s aggression and destruction is dispersed among a great number of people, including everybody’s bosses–the special ed director of the school district, the group home director’s superior, the quality control person for the Division of Services for People with Disabilities. All of these higher-ups know about Jack and his struggles. And none of them has the answers.

What does all of this have to do with being in the moment–just being there and accepting it?

It’s basically this: living in a state of turmoil for so long showed me how to stop and feel, to breathe and accept, and to thank God for any measure of relief.

I learned from parenting Jack that a) things don’t have to be the way you want them to be, and b) you can survive. You can survive unpleasantness and sorrow. You can survive repetition and ennui. You can survive screaming and poop and actual violence from your mentally disabled son.

I know this because I HAVE SURVIVED THESE THINGS. All of them. Repeatedly. And after the horrors and the disappointments come the beauty of NOT being in that moment anymore.

I’ve found that now when I’m doing something I’m not totally into, I sometimes pause to think about the okayness of just doing whatever it is–sitting with a restless children’s class at church, cleaning a bathroom, waiting in line, dealing with kids on the spectrum and their accompanying neuroses, whatever. It’s just a thing and it won’t last forever. Life isn’t meant to be a succession of loveliness without any difficulty. Otherwise, we’d still be in the Garden (THAT garden). Even the three month awfulness of watching my dad die was something I could manage because I saw it as a thing I could do by simply accepting it and helping him through it.

I do it when I’m in the lovely moments, too. I’ll look around and think something along the lines of, “I am playing the piano in Relief Society, and while I may royally mess up at any moment, life ain’t too bad,” or “I am doing the laundry and though it’s Sisyphean, it’s also mindless so I can zone out; also I like having baskets of clean clothes,” or “I am sitting by the fire writing in a peaceful house with 3 of my 4 boys hanging out nearby and this is basically paradise.”

Jack taught me how to accept sadness and disappointment, and to relish times of relief.

Oh, Jacky. Everything I know, I know because of you.

Five O’Clock, in the AM

I’m in a state of weird, nebulous conflict when I think about Jack. He is doing really pretty well, at his home anyway. It’s not going as well at school. He knocked out his school principal’s tooth. For real. He is sometimes having to be restrained. He still occasionally bashes his head into walls and doors.

None of this makes me comfortable. The tooth incident is horrifyingly awful. I feel quite helpless. Jeff and I don’t know how to make any of this better. We pray every day for the safety of those who interact with Jack.

And then there is this blog. I’m using it to track my life as it continues with Jack away. But it’s awkward for me to discuss his ongoing behaviors that hurt people and destroy property. I have this underlying sense that everyone would prefer to see glowing reports of Jack making steady, positive progress. If he has to live in a group home, then of course we all want to see that the new setting is simply ideal–that it has solved all the problems.

But this is reality, not a fairy tale. And while I do believe Jack’s story is moving toward a glorious resolution (someday, eternally), we aren’t currently in that place.

Jack is no longer beating up me or his brothers, but he is hitting, kicking, and biting his caregivers and educators. I’m not on the front lines anymore in a physical sense, but other people are. What about their safety? And they aren’t related to Jack and can’t possibly feel the same, deep obligation to him that I feel. What now?

In this turbulence (particularly every morning at 5:00 am when I’m awake despite wanting to be asleep, stewing over things as they unfold), I keep remembering the process of placing Jack in residential care. It was inspired, all of it. Once we knew it had to happen, we proceeded. I had never done it before, so I was learning it as I went. I saw that any time I tried to make decisions based on my own understanding of the process, God gently redirectly my efforts, leading us to Jack’s current placement. My plans (two separate plans!) fell apart. The path God had in store for Jack unfolded clearly. Jeff and I felt that He was showing us the correct plan for Jacky.

So, basically, at five am every day I ask myself, “Do I have enough faith to trust that plan?”

God loves Jack. He loves me. He loves the people Jack is beating up. He knows everything. I’m sure He knows how to see us through this vale of tears and knocked out teeth. He sees the outcome, even though I don’t.

When one feels helpless, what is one to do? I am fostering my patience as I blow gently on the embers of my faith, which sometimes wanes when it comes to Jack and healing and solutions.

Wait on the Lord, basically. Keep praying. Focus outward, on somebody else.

Jesus knows–me and Jack, and the principal’s tooth, and the head-bashing, et al.

Jesus knows.

Love by Association

I’m in the midst of a crisis wherein I am unsure of the purpose or meaning of this blog. I’m merely letting you know, in case you just don’t know what’s going on here. I don’t know either.


I’ve been shifting my priorities over the last few weeks. I guess the real shift is in my awareness of where I want my focus to be.

I’m doing all the same things–grieving, writing, mom stuff, etc., but I feel a greater sense of responsibility to the people directly around me. My mother. My sons. My students. The people in my neighborhood.

I feel less worried about the future and what it may hold. The result of this is feeling more present and focused on today. And, I’m doing that thing where I pray every morning for inspiration on who I can help that day. “Show me what you want me to do today,” basically.

Of course, this is all beautiful and worthy, except for those times when I actually don’t feel the desirethe capacity, or the love necessary to reach out. At a recent presidency meeting, my Relief Society President spoke about how even when we make an awkward attempt to help or love someone, God magnifies those efforts and turns them into something more than what we can do alone. And I felt the truth in that statement.

The result of this is that I’m thinking about how I can do a better at understanding, being patient, and loving people when they aren’t (or I’m not) being lovable. And refraining from judgment, which is THE WORST for flawed people like me.

Sometimes being a human who wants to help her fellow humans is painful. It’s easy to serve when it’s convenient and well-received. It’s more of a painful stretch when it’s outside our comfort zone and daily routine, and pushes us into a no-man’s land where our good works may not be met with accolades. There are occasions when our honest efforts to help may be met with disdain, or some other great wall of push-back.

I once took dinner to a woman who had just had a baby. She was single at the time. We knew each other and talked in passing at the gas station. But when I showed up with dinner (she had agreed to receiving meals from the Relief Society), she seemed bothered, even angry. I cooed over her newborn but my attempts at any small talk didn’t go anywhere. I unloaded my tray and sought to flee because I could tell how uncomfortable she was with me there. She didn’t thank me or speak to me as I left. Honestly, it shook me up a bit, this scenario of making a gesture of support and having it end with so much tension.

The whole experience did compel me to evaluate why I did it.

Why did I sign up on the list at church to take her dinner? Why did I go to the store, pull out my crock pot, make barbecue chicken sandwiches, assemble a salad, bake cookies, guard the chips from my kids, and do it all while managing Jack and the others?

Did I do it because I wanted to be appreciated and thanked? I didn’t think this was my motivation. But was I sure?

Here’s what a few uncomfortable days of pondering revealed to me:

I believe I did it because she needed to know that people cared, and that they weren’t condemning her.

I know I did it because having babies was brutally hard for me, and while it may not be as hard for every woman, I wanted to help during a difficult time.

In hindsight, I think I can see the situation better. She felt awkward and it made the encounter awkward. She was skeptical of me and everyone who knew her situation. Perhaps more than she needed dinner for her family, she needed to be understood, which I didn’t appreciate at the time.

Fundamentally, I think I did it because I love Jesus.

I love Him. He loves her. It’s love by association, and it bridges the gap.