- I can eat again.
- It’s Jeff’s birthday and we get to have a night out, so yay us.
- Physical therapy is making me huuuuuurt.
- I am now one of those people who complains about sore body parts.
- And talks about exercise all the time, gah.
- I’ve been on the phone with the support coordinator lots in the past week.
- We have discussed and then discussed some more, all the options for Jack.
- There were four responses to his call for service, meaning the search to find a new service provider for Jack’s needs; three aren’t the right fit for him. He would not succeed in those scenarios.
- The fourth, in the southern part of the state, is the only viable option.
- I have prayed a lot that the fourth option would be approved.
- Like, a lot.
- Muchos prayers.
- Many people have suggested we look into the state developmental center.
- A few things to know about this option: a) We are aware of it and feel it is ideal for Jack, however b) it’s kind of impossible to get into until you’ve exhausted all other options and are c) preferably not a minor. I personally believe Jack will live there someday and it will provide the care he needs for a long time. But today is not that day. And we need something else now.
- Other people have said they thought Jack’s current placement was meant to be and they couldn’t believe it wasn’t working now. We do believe it was the right first step for getting Jack into residential care. But it’s not the last stop for him. His needs are evolving and incredibly intense.
- Sometimes people will comment about the endlessness of Jack’s ongoing issues, like in a caring, sympathetic way. I’ve found that this doesn’t make me feel sorrowful or persecuted as it once did. Instead I’ve learned that now I see Jack’s care not as something to solve, but as a process which will continue and require faith and major problem-solving skills for the duration of his life.
- I guess I see the challenges as a series of steps we are taking. It’s a path of stepping-stones and they lead waaaay into the distance.
- Another realization: I don’t feel sad and exhausted about this, as in years past.
- Which is really great, huzzah!
- While I graded papers by the fire this morning, the support coordinator called with this news: Jack has been approved for the facility down south.
- Miracles happen. For real.
- THIS IS A MIRACLE.
- God loves Jack and knows what he needs.
- I reflected and realized that I never doubted that God would present us with a plan.
- I did, however, fear that the next step would be difficult to swallow. And swallowing has literally made me gag, of late.
- Which maybe does mean that I actually am a tad fearful of the length and difficulty of that stepping-stone path, the one that represents Jack’s life.
- And I had a stress dream wherein I went to class (the one I teach) an hour late and couldn’t remember anyone’s name. Also, I had no lesson plan and I couldn’t make the computer or projector work. So there’s that.
- But back to the stepping-stones. Through this tumultuous process, I’ve learned that because this is mortality, there is no final solution.
- There is no arrival at the right place with enduring perfection and happily ever after.
- There is only the next right step.
Wherein I offer *tiny* book reviews of works I have recently read.
Books set in war time:
Beneath a Scarlet Sky by Mark Sullivan. Wow. WWII in Milan. True Story. Going to be made into a movie. They kind of were the greatest generation.
The Girl You Left Behind by Jojo Moyes. Set during the Great War in France and written by the author of Me Before You. Like all war stories, this was so very sad. Good, but hard too.
The Sun is Also a Star by Nicola Yoon. This is one of the best YA books I’ve read in recent years. Natasha and Daniel are two teens in New York City facing deportation and lots of family issues, all while trying to establish their own independence. This novel gives credence to the concept that everyone in the world has a story and that we are all connected to each other as humans. It is beautiful.
Far From the Tree by Robin Benway. This is a National Book Award Winner filled with teen characters that I completely loved. The adult characters weren’t as fully-realized. It’s about three biological siblings who find each other as teenagers. None has a perfect life, but their sense of family and identify grow and evolve in an inspiring way. Salty language warning.
The Queen’s Gambit Trilogy by Beth Brower. Super addictive. A sweeping world-building series. Kind of like Game of Thrones, but without dragons and with a PG rating. I raced through these books and instantly wanted more.
Blood Rose Rebellion by Rosalyn Eves. This novel by a fellow Segullah sister (!) begins in Victorian London, where magic is the primary force by which people achieve status and wield power. Much of the book takes place in Hungary, and is a layered tale which explores the roles of innate gifts, choice, and social strata in determining the outcome of one’s life.
The Hazel Wood by Melissa Albert. Super creepy and creative horror story. The first two thirds of the book are terrifying and amazing; the last third kind of goes off the rails. Quite weird. The fairy tales in this story are real and uber dark. Again, beware the salty language.
Educated by Tara Westover. I am obsessed with this book. The author was raised in Idaho by survivalist, extremist Mormon parents. She had no birth certificate and never attended school. With mental illness and abuse as foundational pillars of her childhood home life, she nevertheless taught herself enough math to pass the ACT with a 28, which was sufficient to be accepted to BYU. Ultimately, she earned graduate degrees at Cambridge University and a fellowship at Harvard. Horrifying, inspiring, and BEAUTIFULLY written.
Wuthering Heights by Emily Bronte. This is my second time reading this, one of the most well-regarded books in the English language. I figured because I loathed it the first time through all those years ago, it deserved another look. You’re probably already familiar with the story, but if not, allow me to toss a few descriptors at you: DARK, STORMY, SAD, MELANCHOLY, WIND-SWEPT, DEPRESSING. The skill with which this story is told as a tale within a tale (practically within another tale) is stunning, and the language is, well, remarkable. The Brontes WERE geniuses, you guys. And the fact that Emily died at age 30 after WH‘s publication makes her masterpiece even more tragic. I’m glad I read it, but Jane Eyre by sister Charlotte is still the best book ever. Feel free to disagree, but you will never change my mind.
What are you reading?
The nausea started as soon as I got the call a week ago Monday. Jack had attacked a number of people at school, including a kindergartener, and had been taken by the police to juvenile detention.
It persisted through each follow-up phone call over the next week:
*the group home, apologizing as they said they can no long care for Jack
*the manifest meeting with the school team, where his teachers cried as they said they love Jack, but he is suspended from school (with at-home instruction of a teacher) for 45 days, or until we figure out a more appropriate education setting
*the Child Protective Services guy, who said someone (I know who) made a case for Jack being neglected (he’s not; what he is, is difficult to care for)
*the county court clerk, who called us about the charges the kindergartener’s parents are bringing against Jack; which, following a psychological evaluation, will be thrown out, but will prove to the state that Jack needs greater levels of funding for more intensive care
*the neuropsychiatric hospital, reinforcing that they don’t have room for Jack to be admitted
*one of the other group home providers, wanting to know the extent of Jack’s aggression before determining if they can take him into their care.
Things are in limbo as we decide what’s next for Jack. This moment does not come as a surprise to us. Since Jack was in the hospital during the month of December, Jeff and I knew his current placement would not last, despite everyone’s best efforts. He needed a change, and the recent behavior incidents have forced the issue.
But still, the nausea. Even when I truly believe God is driving the bus of Jack’s life, I can’t see just exactly how the future will unfold. I’m queasy and struggling to eat. And sleepless in the wee hours of the morning.
Also, my back and shoulders hurt, because they just do. At my physical therapy appointment this week, I stopped halfway through the exercises and said if I kept going, I was going to throw up. The PT and the assistant were sweet and concerned as they made me sit down, bustling around me with ice, pillows, and water. They told me to ease off on the frequency and intensity of my exercise routine while my life is in turmoil. And they massaged the knots out of my back before sending me on my way with their best wishes.
I feel moderately peaceful, at least on the surface, but my abdomen is telling me that subconsciously, there is a substantial level of worry which persists.
In the meantime, I’m teaching and grading, Henry had his first prom, and Charlie had his 10th birthday. Because life doesn’t stop for one kid and his uber extensive needs.
Reader, the crux of the nausea is this: my anguish has been tied up in the unknowns of Jack’s suffering.
He is lashing out. Is he miserable? He is aggressive. Is he in pain? He can’t speak. How deep is his frustration and suffering?
I’ve curled into a literal and figurative ball around this torment as I’ve worried about Jack.
Last week, my neighbor called, saying she needed to come see me.
I don’t know her well. She barely knows me. She was insistent. I said okay. We sat down in my living room late Friday night and this is what she said:
“I was told to come talk to you.”
“By who?” I asked.
“Jack.” she said, never breaking eye contact. “Jack came to me and told me to speak to you and tell you he is FINE.” She emphasized this word.
My initial response was complete disbelief, reinforced by all the reasons why this could not be. Yet, even as that thought materialized in my mind, an outside source pressed instantaneously and deeply into my psyche, overpowering my skepticism. It was a profound whisper that said, “This happened. Believe her.”
Warmth flowed through my arms and chest.
She proceeded to tell me that her whole life, she has experienced spirit-to-spirit communication with people who haven’t been born yet, who have died, who are in comas, and (apparently) who are disabled. It took her years to understand this for what it is–a spiritual gift which isn’t for her benefit, but to help people around her. She doesn’t talk about it, because you know. Awkward.
It happens when she’s sleeping and in a dream state. But, years of this have taught her, she’s not dreaming. She’s seeing people’s spirits. She doesn’t know them, but they come to her spirit because she knows someone who knows them. She wakes up and writes down whatever she saw, for accuracy.
She told me that Monday night of that week as she was sleeping, she saw Jack and he spoke to her without using words.
She didn’t at this point know that Monday was the day Jack lost his mind and went crazy at school.
We looked at each other, blinking.
“What did he look like?” I wanted to know.
She shrugged, “Like himself.” He looked like he currently looks. “But,” she continued, “He isn’t disabled. His spirit is NOT disabled. He is …” she paused, “remarkable.”
She proceeded to say that Jack told her to talk to me and tell me he is okay, that his spirit is not suffering. He wanted me to know that despite the chaotic events, he is fine.
My neighbor looked at me and nodded. Then she smiled softly.
It’s not really possible for me to verbalize the emotional relief I experienced at this moment. The tears spilled down my cheeks, the tension in my shoulders ebbed, the writhing pit of anguish in my belly disappeared.
Jack is not suffering.
Jack is inwardly at peace.
The things that are happening around him are simply things.
But Jack, my Jacky, is FINE.
There was an exquisite silence as I processed this.
After a time, I inhaled and exhaled. I told my neighbor that when Jeff and Peter gave Jack a blessing Tuesday night after the children’s hospital ER and before we returned him to his group home, I’d had a distinct impression as soon as Jeff started speaking. I heard a voice in my head say, “Jack is filling the measure of his creation.”
This gave me pause. “Filling the measure of one’s creation” is a phrase in my faith that we sometimes associate with animals in mortality. I salted it away and determined to think more on it. I did not yet understand.
My neighbor said, “I don’t have words to explain things, other than describing what I see. What I observed is that there is some level of separation between Jack–his body and his spirit.”
Whereas you and I are all in, so to speak–fully immersed in our physical bodies, she saw that Jack seems to be somewhat separate.
“It’s like he is watching himself on a movie,” she described.
He is filling the measure of his creation.
This phrase which had blasted into my brain during the healing blessing suddenly made sense to me.
His body is filling the measure of its creation. He was born and he is living, going through the experiences of his life. But Jack’s spirit is not trapped or imprisoned or in perpetual anguish, as I feared. His body is growing and eating and often hitting or biting people. But his spirit is…fine.
His spirit is beyond fine.
My torment is gone, replaced by the empty fullness of relief.
This is how I know, dear reader, that peace is real in impossible situations. Jesus carries the sorrow for us, while sending actual relief from anguish.
I just re-read in 2nd Nephi that “Angels speak by the power of the Holy Ghost.” They straight up do. This is real to me. Even in the depths of the pit, God sends people to be with me.
Before she left, my neighbor said, “Jack isn’t just here for you. He is here to teach many people many things.”
This is the part that profoundly affected Jeff when I recounted the conversation after she left. He and I have always known this about Jack. But the fact that she said it was a confirmation of both Jack’s purpose and ours as his parents.
He is an eternal being. So are we. My dad is, too, though he’s currently separate from us.
I feel as though if I work toward it, God will lift off the top of my head and send a pillar of light to fill it with more understanding.
I gave my writing students the following prompt this week: Write about someone who has had a profound impact on your life.
I wrote while they wrote, and this is the result.
(For context, as I was writing and teaching this, Jack was en route from his rural town to the children’s hospital, following a week of heinous behavior which included being taken to DT in a police car and having charges brought against him for smacking a small child at school. See fb or Instagram if you want to know more. *Hint, you don’t want to know more.)
*Ahem* (clears throat).
Jack has had a profound impact on me.
From him, I understand more about humility, fear, the depth of love, lack of control, true hardship, true bonding, perseverance, acceptance, violence, hurt, seeing past people’s flaws, seeing people’s true selves, and hope.
I am harder now—in the sense that I don’t waste time worrying about certain things or what people are thinking about me.
I’m softer in the sense that I can empathize with people in their struggle, whatever that struggle looks like.
I’m sadder, because I’ve been to the depths and back.
I’m happier, because I’ve been to the depths and back.
I appreciate variations more, meaning I value calm, boredom, excitement, novelty, spontaneity, and routine. When there is freedom to be different and experience difference, there is beauty in life. The opposite of this feeling is bondage, and it restricted my life and spirit for years.
In the past week, I have experienced a strange vacillation, of swinging between a) feeling like the issues with Jack are never-ending, to b) feeling an encompassing sense of “normalcy” in the chaos. It just doesn’t seem surprising anymore, nor entirely overwhelming (she said, ironically, as she wrote in the quiet of the university library on a sunny morning, after a decent night’s sleep).
Yesterday was a different story. Following two nights of subpar sleep, compounded by the emotional free-fall of Jack’s awful week, I was the very definition of overwhelmed.
Today is a new day.
I’m just not super shocked by the things that happen anymore. It’s basically life with Jack in it.
At the same time, when people announce their pregnancies on social media, I straight up feel nauseous on their behalf. This is not hyperbole. I see the possible beginning of a burden-filled, soul-taxing journey in the name of raising children. Because of the wild nature of my parenting experience, I know what could happen, and it makes me entirely jaded.
Child-raising, it turns out, is my Everest.
While I know in some subconscious place that not all people will face a parenting battlefield like mine, I see the potential for disabilities, for extreme hardship. I don’t see it as something that happens to other people. I see it as a reality, even an inevitability.
I’ve wondered if my life as a mom of children with special needs has made me more fearful. It’s certainly led me through fear. But I’ve been doing this long enough that I can see how the process works. My family has also pushed me past those murky swamps and on to acceptance, growth, and understanding.
While I’m utterly exhausted and sometimes filled with rage at the strenuousness and the endlessness of disabilities parenting, I am simultaneously glad that my children are mine. That their struggles are my struggles. That we are doing life together.
They are mine. I help them. They teach me. We love each other.
We are family.
We have gotten away.
The five of us are AWAY for a long weekend in St. George, where it’s warm and sunny. This is what I’ve dreamed of since my dad went on hospice in October. Getting away.
It’s wild to me how a simple change of scenery can shift everything. No snow. No obligations. No people. Nowhere to be. Angst begone.
The five of us doing what we want to do. We brought two gaming systems with us for the boys. There is plenty of lounging around. The pleasantness of sitting outside in the warmth is luxurious.
I’m meeting my dear friend, Lacey, for lunch tomorrow. She moved here last year with her family in order to help her special-needs daughter better cope with the winter months. She took the photo at the top of this blog and is one of those people with an eye for making basically everything beautiful. When we come to St. Geezy, I dream of having her take a current family photo. Then the gloom sets in, because Jack can’t travel with us. Will we ever have the opportunity for a photo shoot with the entire family?
These are the dumb things that plague me.
Meanwhile, we are here, though Jack is not. It is a beautiful place and I’m hopeful for spring and rebirth after a winter of sadness. And I brought three books, so yay.
The little boys want to swim at all times, and Jeff is taking me for tacos tonight at that place we like.
Thank you, God, for this blissful moment.
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.
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.
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.