Monthly Archives: June 2017

It Will Work Out

On a whim, I went to see Jack this week. I don’t know what I was expecting.

I won’t lie. It kind of sucked.

The little boys whined on the long drive there. They were bored. It was too far away, et cetera.

When we arrived, Jack ran out to the car and hopped in. I told the assistant house manager we were going to get fries. We got fries. Jack was calm. He looked older, taller, and skinnier to me.

We stopped at the park near his house where he ate his food while the little boys wandered around. It was hot.

I looked at Jack sitting in the shade on the grass eating his fries and I felt a dual wave of love and sadness rise within me. He’s my son, but he’s not mine anymore. I don’t take care of him on a daily basis. He’s changing and I’m not there to see the subtle shifts—only the jarring ones after periods of time between visits.

What did I expect? Jack didn’t run to embrace me. He didn’t take selfies with me. He didn’t tell me stories about his new life.

He can’t do those things.

He is my same Jack, the one who is nonverbal, who doesn’t behave typically, who is disabled enough to warrant living somewhere else with full time caregivers.

When we returned to his home, he opened the sensory presents we brought. We wandered outside and sat on the porch with him. But after a few minutes he was agitated. He didn’t know what to do with us. I tried doing bubbles and play doh with him. I offered him a ring pop. He didn’t want to be touched.

When he did tongue face and banged his head against his elbow, I saw that we were disturbing his routine. We were a wrench in his afternoon and it was stressing him out.

I spoke with the director and the assistant house manager about Jack’s care. I gave him a hug. As we walked out the door, he looked over his shoulder at me from the couch. I blew him a kiss and told him I love him. He blew me a kiss. Charlie said “I love you, Jacky.”

We got in the car and Jack watched from the window as we drove away.

Leaving a second time didn’t feel any better than the first time. It was a bitter draught, a gut punch. It hurt.

The landscape between Jack’s town and ours is beautiful. I hadn’t really noticed it coming home the first time five weeks ago because I was at that time emotionally gasping for air. I was still emotional this time, but I felt the scenery helped salve my raw soul.

“Life is so painful,” I thought.

I held onto this thought: the only thing that’s getting me through this endless cluster cuss of sadness is the fact that Jesus made sure that Jack has a full, complete, whole life ahead after this mortal hardship. He will get to live a life that isn’t suppressed or limited. All the unfairness will be gone.

Anticipating that day is hopeful. It brought me peace when I felt wrung out by the pain of Jack’s current existence.

At the halfway mark on the drive home, I got the distinct impression that all the crappy things about Jack’s life are a deliberate part of his mortal journey. They are earning him his reward.

God knew I felt awful about all of it. He shined the saturated light of a summer afternoon on the canyon walls around me, lifting my spirit and reminding me that Jack’s potential goes way beyond the limits of today.

He showed me it will be okay.

Writing About the Elephant

We have concluded our annual vacation to Yellowstone National Park. It rained, a lot, which made for stunning, moody landscapes. It was cold, green, and lovely.

And now I am exhausted. I hardly have enough energy to drag myself around the house daily what with this grief that’s strapped to my back/heart/feet. But Yellowstone is a busy trip, full of hiking and traipsing around the enormous park. So I hiked and walked and drove and experienced, hence, the weariness.

Though Jack hasn’t traveled with us for some time, autism still goes on all our trips. Charlie and Truman are higher functioning and verbal, so it’s not the same level of difficulty. But the rigidity of autism remains, as do the meltdowns over transitions, the need for flexibility, and ongoing sensory challenges. My younger boys are able to do so much more, comparatively, so I haven’t written as much about their idiosyncrasies. Talking about their issues, which are milder but nevertheless real and problematic, feels … I don’t know. Like whining, I guess?

We have adjusted our family life to cope with the sensory and learning needs of our little boys. While it isn’t necessarily easy, it’s part of our routine. We expect it. We plan for it. We address it as needed. I suppose it doesn’t feel as much like a story to tell because it’s our every day and we are used to it.

A woman from Brisbane, Australia messaged me this week. She began reading our story around the time of Jack’s placement in his new home. She mentioned something that I keep pondering, because I don’t have a definitive answer for it, at least not yet.

She wrote:

“As an outsider looking in, who only has the details you’ve chosen to share publicly about your life, I’m most astounded by the way in which you normalised (for want of a better word) behaviours and experiences that are anything but. I’m curious to know if that is a choice you make or if it is an organic part of the process of parenting a child with special needs? Perhaps that’s what acceptance is all about…” –Michelle H.

I really appreciate this thoughtful and honest question from Michelle. I’m still wrestling with it, so how better to find resolution than through writing, bahaha. I’ll figure it out on the page/screen as I go.

My first response when I read Michelle’s message was to ask myself, “Are we really that strange?” which I quickly answered in my mind, in two parts.

1. Of course our experience is way outside of normal. I’ve known this for some time. Placing your thirteen-year-old in a group home permanently, and all the preceding years of trauma leading up to it, are not common milestones. Jack is quintessentially special. We are unique because of him.

2. My ability to write about our life only happened a) when God told me to start writing about it and I decided to listen, and b) I began to work through my shame at our differences and if not accept them, then at least acknowledge and name them.

This is when I began the real work of plumbing the depths of our very different life experiences, first from a humor perspective (look how weird our life is, also here are a few crazy stories to illustrate, wow that’s nuts, *insert self-deprecating vignettes* hahahahaha) and then from a spiritual perspective (wherein I talk about Jesus as the buoy that has kept me afloat in my ocean of suffering).

But if I’m being completely truthful, with myself and with Michelle, I don’t know if this process was a choice, or if it was an evolution of thought leading to acceptance.

When mental and behavioral disabilities dictate the daily reality, they are simply always there. They are the elephant in the room, which I suppose I saw no reason to pretend to ignore. Just because the elephant isn’t in everyone’s room, doesn’t make the elephant plodding through my kitchen any less real.

I write about our elephant.

And why not, honestly? If we all had huge, stinky, wrinkly elephants as house pets, it wouldn’t be unique. Because we have lived with an elephant, so to speak, it’s an unusual story, and some people have been drawn to it.

Another comment which I’ve heard a fair number of times is, “You are brave to write this.”

I don’t know how to take this one.

Does this mean “you are brave because that’s some crazy shiz that regular people don’t talk about” or does it mean, “you are brave because those are hard things to admit out loud” or is more “you are brave because regular people don’t (and maybe shouldn’t) talk about those things?” Or are all of these scenarios variations of the same statement?

It’s a conundrum. The “you are brave to write this” comments are compliments, but they’re also a tad abrasive to me as a writer and a woman who has lived through completely abnormal parenting and family situations. For some (probably unintentional) reason, it makes me feel even more other.

Of course, if it weren’t for our otherness, I probably wouldn’t have anything to say. I don’t write novels. This is creative nonfiction. I write my life’s story which I have always said is stranger than fiction. You honestly can’t make this stuff up, unless you’re God, planning out my life hahaha. He gave me a figurative elephant and spurred me to write about what it’s like living with a pachyderm in your presence.

According to the playwright Lorraine Hansberry, “The thing that makes you exceptional, if you are at all, is inevitably that which must also make you lonely.”

To this, I say, we are all exceptional in different ways, and thus, as my friend Beck puts it, living on opposite sides of the same loneliness coin. Our different forms of pain isolate us, but the fact remains that we all have pain. It is our common denominator as humans.

Jack has taught me many things about living, and perhaps the foremost is this:

We all experience suffering, sadness, disappointment, heartache. The beauty of pain is that it softens us, compelling us to look inside ourselves and ask the big, metaphysical questions as we wonder why and how and also really? why our lives must be as they are.

My suffering has been as a hand drawing back a drape to reveal the Savior right here, next to me, as I dodge the elephant, write about it, and keep wondering why.

Jesus is beside me, and because Jack is my son, I can see this.

New Life

My current life feels like an easier replica of my former life as Jack’s caregiver.

The setting is the same. The rest of my family is the same. The people around us are the same (minus the rotating army of respite helpers, therapists, doctors, and teachers). But now I do 90% less work and my stress and anxiety has sunk to subterranean levels.

I’m not complaining. I do feel rather adrift. And maybe a little bit lazy. I’m telling myself that it’s not lazing around, it’s normal life, which mine has not been for a long, long time.

I sit on the porch now frequently, writing or reading while the little boys play outside. I get back in bed for a while after feeding everyone breakfast, because it feels nice, and I’m always tired, and I can. I run errands at any old random time of day, and with all the guys. I don’t have to wait until Jack is at day camp or has respite care.

All of these things are good and refreshing.

But still, I grieve.

Jack is settling in. He seems basically happy. He is making progress. Jeff and I feel peace regarding his new home and his new life. But when one of your family members is essentially lopped off from your home and daily life, you don’t just bounce back right away, I’m finding. Grief is grief, apparently, and it takes its own sweet time.

I make no pretense about knowing HOW to cope with the grief process, but I am aware enough to know that no good will come of trying to shortcut anything. I’m experiencing all of it. I’m letting it pass through me and over me, in whatever time frame it requires. I’m accepting the bleariness, the exhaustion, the fact that my mind is rendered stupid by the fallout of mourning the old life, as well as the current and future family life I thought we would have.

I wonder if I’m doing enough with myself, because I’m unused to the relative ease of my new days. I’m also still devoid of energy, so any big projects are going to be tabled. I’m not there yet.

It’s not that my hopes and dreams are dead. They are dormant. There is a future ahead of us, and I’m convinced it is better than what we’ve lived these dozen years.

Postcard From Jack

I saw Jack today for the first time in three weeks.

Jeff goes to Jack’s new town roughly once a month for work, and planned to stop in and see Jack while he was there. When he arrived, he could hear Jack, the house manager, and Jack’s housemate in the backyard. “I couldn’t see what they were doing,” he said, “But Jack was making happy sounds.”

As soon as he saw Jeff, Jack jumped in the car and they went for a drive. They Facetimed me in the car and this is what I saw:

*Jack got a haircut. Like all his haircuts, it was a little rough around the edges. He won’t hold still long enough to achieve any other look. He appears quite grown-up.

*He wouldn’t look at me for the first few minutes. He looked out the window, calmly.

*Later in the conversation, he looked directly at me for some time. I smiled and blew him kisses while I talked and he stared. Charlie and Truman said hi. My parents said hi (we were sitting in their backyard).

*Jack looked older. Maybe it’s the haircut. Maybe it’s that I haven’t been around him for a month. It felt, though, that he appeared more mature because he wasn’t lunging, pacing, thrashing, throwing, or wailing about things. He was self-possessed. It was a level of calm I haven’t seen in him before.

We ended the call and Jeff took Jack to McDonald’s. Apparently Jack was much better behaved in the car than in the days when he lived at home. After their drive, they returned to the group home, where Jack scampered inside. Jeff went in and they sat in the living room, chatting with the house manager. At one point, Jack stood up and pushed Jeff out the front door, because haha, he was done. Not one for social boundaries or constraints, Jack clearly enacts what teens everywhere wish they could do to their parents. Jeff went back inside and talked a little longer, before retrieving a new Dustbuster from the car. Jack happily unpacked it and made no attempt to leave with Jeff.

This first contact post-placement went far better than I had hoped. It’s probably better that I wasn’t there, because on the drive home from my parents’, the emotions simmering inside me this past month bubbled up and boiled over. It wasn’t as much sadness as it was realizing how much I miss Jack, with a side order of gratitude that he is well. I’m happy that he has this new home—a practically perfect setting for him.

When he walked through the kitchen, Jeff noticed a plastic chain around the refrigerator door and commented to the house manager that we had wanted to do something similar at home, but it wasn’t realistic with all our other children. Jack needs environmental boundaries to help him with impulse control and the regulation of his eating patterns. The plastic chain on the fridge door represents to me the life that Jack needs, but which we couldn’t give him anymore.

This new, custom-designed setting for change that the forces of heaven have so obviously wrought for Jack, the snatches of growth I saw briefly on my phone as Jack and I saw each other, composed a scenic postcard.

Weather is beautiful.

I DON’T wish you were here, because I’m okay.

Everything is okay.

Tell Dad thanks for the fries, the drive, and the Dustbuster.

xo Jack

 

Jack Lives in a Small Town

Jeff and I went into Jack’s residential placement with the idea that his current group home would be temporary. We couldn’t stomach the thought of moving him so far away from us. As we began the process of placing him, however, we began to see the distance differently.

All the things that felt wrong to us about his current town now feel really right.

For years, I struggled to acclimate Jack into life on the rapidly growing Wasatch Front, with little success. Now he lives in a small town, and it seems to be just what he needs. It’s calmer, slower, uncrowded.

Jobs are more scarce there, so employees at the company running Jack’s group home are committed. We couldn’t keep employees here, and we were never able to fully staff the necessary hours for Jack’s care.

There is beautiful scenery and wide open spaces to spare around Jack’s town. Traffic jams aren’t a thing there.

I worried that a rural community wouldn’t have the same educational resources that Jack has benefited from here. But, it turns out, his new town ACTUALLY HAS a self-contained school for the disabled, and its pedagogical philosophy is much the same as his old school near us. What are the chances? What miracle is this?

Never in his thirteen years have I considered that Jack would thrive in a small town. It never seemed like a better option. It’s funny how now I can see that I had it all wrong. I didn’t know what Jack needed, though I thought I did.

I am constantly learning that Jack and I are different. He isn’t an extension of me, of our family. He is an individual, with needs that don’t match up with our other sons, or with the general population. Where I might feel trapped or bored or limited in a small town, it is exactly what Jack needs. And the distance is less of an issue, because we can’t take him to family events anyway. Jack’s presence at family dinners have been rife with meltdowns and near-disasters for years.

Jack has changed the way I think. He’s changed my perspective on what a good life is. He has altered my priorities.

I continue to be astonished at how humbling my life is, and how much I continue to learn, despite being a grown-up who supposedly has it all together (I have nothing together).

God Loves Jack

My conversation with Pattie has carried me through the last few days. It makes all the difference to me to hear from the people who are with Jack. They are doing a good job of taking care of him. They are doing a better job of it than I did, because there are more of them, and Jack is their complete focus. Because they aren’t with Jack 24/7, they come to work without the baggage of weariness a parent like me carries. When their shifts end, they leave any cares or stress of the job behind. They are neutral (loving, helpful) third parties and they are what has saved us and what is giving Jack a sustainable future.

Contrarians might assert at this point (though nobody asked their opinion anyway) that Jack isn’t with his natural family, his parents who love him best. How can that be better?

I would tell the contrarians that I don’t know why this is the path we had to pursue with Jack, but it is, and God made it pretty clear. We did raise him up and love him in our home for thirteen years—a feat! But arguing with reality is futile, which in our case is this: God made Jack just the way he is, and then told us to pursue residential care for him. I guess if anybody wants to argue about Jack’s path going forward, they can take it up with God. I do what He says. I just work here.

Not that I’m getting any push back from random people. I have felt support from near and far. There are a few who have insinuated that this was maybe a long overdue decision, but that claim also means nothing to me because those who suggest it weren’t living in my house or assuming the caregiver role for Jack plus three other boys (2 with autism) for more than a dozen years. When you don’t know much about a situation, you can judge it poorly from the outside. Or you can assume people are doing their level best, which leads to compassion.

I’m not sure what my purpose is in explaining myself to vague internet readership. But there it is.

I’m feeling happy because I talked to Pattie and heard about Jack’s new life and the people who are making it happen. This makes me grateful.

All of the things I’ve seen through this process have shown me that God loves Jack.

Some Days are a Smudge

I had a conversation with the residential director in Jack’s area yesterday. It was 8 and a half minutes that soothed my worries. She told me stories of Jack’s day, involving car rides and vacuums and being content. This is what I needed to hear. Jack is doing Jack things. He is being himself, and they are being good to him. Everything is proceeding and is okay.

This afternoon I saw a few of my special needs mom friends over lunch, and it was the social equivalent of a cold soda and a swimming pool on a hot day. With brownies, and a comfortable chair in the shade. I am replenished.

Some days are sad, and I drive to Sodalicious for a big cookie.

Some days are calm, gentle, happy. I see all the ways my family is able to flourish within this new dynamic. I can see how we couldn’t function anymore, as things were. I feel the rightness of it.

Some days are a smudge of both sad and happy.

Such is life, as it involves people and problems and differences and (sometimes) overcoming.

Good and Sad

I went to the gym today, which was some sort of a victory. I haven’t been in a few weeks. Grief sucks energy, yo.

Now I’m doing laundry, and I’m feeling accomplished, because it’s a thing I can say I did today. And I made a real dinner the other night, so feel free to congratulate me.

Jack is trying new foods at his new home. He is learning to sign much more than he did with us. These steps forward are giving me comfort. He’s stretching and growing. He is adjusting to his new life. Jeff and I are going to visit him in a few days. We wanted to give him at least two weeks to settle in before we came to see him. Even still, it may be confusing for him when we leave and don’t take him with us, and it might feel like we’ve smashed my bruised heart between a couple of cinder blocks. Hopefully not. We’ll see.

Grief isn’t exciting to write about, but then again, neither were the behavior problems of the last five + years.

I’ve noticed that while my family is carrying on basically normally, I am sadder, quieter, wearier. I suppose it’s because I am the mom, and I carried Jack in my womb, my arms, my car’s backseat, my mind & heart for so long. I did so much for him—more than my other boys needed from me. You can’t relocate your nonverbal thirteen-year-old and relinquish your role as caregiver without feeling the pangs. It is not the same.

Nor will it be. That is both good and sad.