More Unsolicited Advice

A few weeks ago, I wrote a post offering advice on navigating the special-needs parenting journey, which seemed to resonate with a bunch of people. It didn’t feel entirely finished, so I’m going to write a bit more. As always, these anecdotes may not apply to you or your situation. But they are what I have sincerely learned for myself in the hinterlands of disabilities parenting. Cheers, darlings.

Don’t Go Too Far Into the Future

It’s easy to panic about the future when you have a child who is different. Perhaps the outcome of the child’s condition isn’t well known. Maybe there are a lot of unknown factors. People have asked us all through our son Jack’s life what his prognosis looks like: would he ever speak, when would he begin reading (cue the eye-roll), when would he stop acting out, how big would he get?

After diagnosing Jack, our geneticist told us to consult the internet and see what we could find from other parents, because there were so few research studies at the time about M-CM Syndrome. He didn’t have much concrete information about the future. At every appointment, he asked us how we could educate him about the syndrome. (Note: going to a doctor who wants you to teach him about your kid’s rare condition is the actual worst and I hated it so much I can’t even #flamesonthesidesofmyface). Basically, the answer to everyone’s questions about Jack’s future, was “We have no idea.”

Roughly 88% of all my existential meltdowns over the years have happened when my mind has gone all worst-case-scenario over our family situation. Let me repeat, I was not necessarily falling apart because things were actually catastrophic; I was falling apart because I could foresee things getting much much worse, and my imagination turned toxic.

And so, when Jack was barely a kindergartner, I made a pact with myself that I wouldn’t think about the future. I allowed myself to think a week ahead, a month ahead, six months ahead. But that was it. I could only stew about and make plans for and contemplate things in the foreseeable future: Early Intervention, specialist’s appointments, Structured Playgroup, visits to grandma’s, and trips to the gardens or a museum or the zoo.

I DID NOT LET MYSELF THINK ABOUT WHAT JACK’S LIFE WOULD BE LIKE BEYOND THAT.

I couldn’t. It was terrifying. And yet, when I wasn’t trying to fill in the specifics with my own limited understanding, I retained an unformed but palpable sense that things would be better someday. This leads me to my next point.

Hold Onto Hope

Yes, it’s a cliche, I KNOW.

But it’s vital to your own health and your family’s ability to weather their challenges. Hoping for better days is what compels us to engage with the painful things. We face them with a sword of belief–that we can improve some things, and that we can find a place of peace and acceptance.

I didn’t know how things would ever get better. They were simply so bad for so long. But on a spiritual level, I knew somehow they would improve. In my mind’s eye, I could SEE us in later years. I could see us happy and calm, with Jack in a good place where we would visit him, and where he got the care he needed.

This is what I held onto for a long time as we worked through years of therapy and ear infections and Code Browns and behavior problems.

My Take on Inclusion

Someone asked me for my thoughts on the concept of inclusion when I wrote that other post, so let me speak to this idea.

I used to fear too much intermingling of neurotypical kids with neurodiverse kids (meaning MY kids!) It just seemed so fraught with difficulty. Jack would knock down kids at the playground who were in his way. Preschooler Charlie would say weird things and have tantrums over something as small as a fire truck’s siren somewhere in the neighborhood. I just got so tired of always explaining my kids’ differences to everyone.

At one point, I wanted to fashion a sandwich board to wear around in public that said something like: My kids have autism. They are overwhelmed. But they want to do fun things in public, too. We don’t need advice. We are doing our best. Have a nice day.

Over the years, I’ve become more relaxed about plopping my family with our incumbent issues in the midst of gatherings of “typicals” everywhere. I don’t bother explaining the hyper-focused comments about World War II history that Charlie throws into literally every conversation. I don’t worry about what people may think about my kids’ rigidity with routines. I’m unconcerned with anyone who may be inclined to be annoyed or confused at my sons’ delays with reading, toileting, socializing, etc.

It just doesn’t even bother me, anymore. My kids are the ones with special needs. I don’t need to protect everyone else from exposure to people with differences. Those people are perfectly capable of observing and learning and accepting, which they generally do.

Charlie is now mainstreamed at school for much of the day, and has made good friends. He’s quirky, but he’s also super charming, so people like him.

Truman doesn’t qualify for an IEP. He’s academically ahead. And yet, he had to be literally dragged into his first grade classroom every day for six month of this school year (by me, in my pajamas, HOO BOY). His classmates saw a fellow student who was having a harder time adjusting to the sensory input of a new grade level and, remarkably, they didn’t judge him for it. They just looked at him, said hi, and carried on with their day. His teacher is an ally when it comes to giving Truman time to go jump around or play with a fidget toy in the cubby room when his internal engine is revving way too fast. She also lets him sneak the crackers in his backpack to keep his tummy full, which solves 94% of his behavior problems.

At the same time, I am unwilling to expose Jack to the general population, for everyone’s safety. Jack has always been an outlier, in terms of disability. He requires the MOST restrictive environment, which is the opposite of what people strive for. But it’s what he needs, and when his needs are met, he’s a peach. The behaviors fall away, and Jack lives a happy, peaceful life.

Accept That Everyone is Doing Their Best

This includes you. And your child. And the woman in the grocery check-out line who asks, “What’s wrong with him?” while peering into your toddler’s stroller. And the school administrators who have a different vision of what your kid’s education should look like. And the parents in the children’s hospital waiting room who keep staring during your nonverbal preteen son’s outbursts. And that one church leader who told you if you just tried a little harder, you could fix all your family’s problems. And the kid who saw Jack tantruming and said to your neurotypical son, “I’m glad my brother isn’t crazy.” And the people who send you “inspirational” articles about people with autism being “cured” (hello, red flag) or even just living independently or going to college (things that surely are inspiring, but which will never happen in this life for many people with disabilities).

When I started to see the people around me as flawed, but intrinsically good, I managed my expectations better. While many comments still hurt, I began to stop holding onto them. I kind of just watched them fly past me like weakly-launched arrows, falling benignly to the earth a short distance away.

I don’t know how I got to this point. I think it happened when someone said and did something very hurtful to me. I wanted to tell this person off and give them a taste of their own medicine. I ranted in my mind, practicing my verbal jabs for when I saw them and told them what I thought of their behavior. But here’s what actually happened. I saw this person, and while I felt so angry, God audibly said in my mind, “I love them as much as I love you.”

This is what did it. It quelled my fury. Seeing people as God sees us diffused my anger as I deeply considered that we are all beloved.

It’s what I wanted for Jack and my other boys, too. They could be really difficult, too, but I wanted people to be forgiving and loving to them anyway. I began to see that we all need understanding and patience. It’s the human condition.

Avoid Thinking too Generally

When I think about all the families struggling with autism or seizures or bipolar disorder or complex medical conditions, I feel overwhelmed and depressed. How can the world handle so many people who face so much hardship? How will all the aging kids with autism find care as adults? How can so many beleaguered parents face impossible situations into perpetuity? How, how, how, how, how.

And when I get like this, nothing good comes of it. It’s really simple to go down the rabbit hole of worry and defeatism when you think in global terms. My solution has been to think locally.

I’m not smart enough or powerful enough to solve everyone’s challenges. But I am able to look at the ways God has directed me to always find the right solutions for my children’s needs. We have always found our way through, even it if took time and tears and effort and lots of detours.

I’ve been rather overwhelmed at times by the suggestions from Truman’s Occupational Therapist, who has urged me to create tactile bins, establish a reward/incentive jar with pom poms, create a visual schedule of moving or calming activities, establish a supply closet of sensory activities, expose Truman to organized sports, spend time building forts/ropes courses/obstacle courses, and implement a system when Truman learns to take responsibility for assessing his own inner engine.

You guys, pom poms and rice bins and ropes courses are way way way outside my wheelhouse. My entire being bristles at the idea of crafting visual schedules and forcing Truman, the biggest homebody who ever lived, into sports. These ideas make me want to retreat to the woods and never emerge.

But I’m a grown up, so at some point I took a deep breath, ate a Sodalicious fudge cookie (or a pink sugar cookie, I can’t remember), and decided to OT the heck out of Truman’s life in my own way, which looks like this:

  • My version of tactile bins is asking Jeff to pick up some bags of sand to spruce up the sandbox in the backyard.
  • My version of pom poms in a jar is reminding Truman that if he does his jobs as soon as he’s asked, he can earn more time playing with friends or electronics.
  • My version of sports is going for a walk with Truman blazing a trail ahead of me on his scooter. It’s also inviting the neighbor kids over and shooing them all outside to swing and jump on the trampoline.
  • My version of a sensory supply closet looks like a few tubs of playdoh, a couple games I ordered from Amazon, all the living room throw pillows and blankets, and the bathtub. It’s enough and it works.
  • My version of an evolving schedule for Truman is having a list of ideas on my phone, and asking him to occasionally assess his inner engine and make choices about how to either calm it or redirect its excess energy.

I should write a (very short) book titled, Occupational Therapy for Dummies.

This is all to say that thinking broadly and idealistically gets me down. But thinking in manageable, incremental pieces, which happen to also be simple and convenient, makes handling Sensory Processing Disorder do-able.

Another vignette about thinking locally, not globally is something I did last summer. I felt inadequate at the scope of suffering among my special-needs parent friends. At the same time, I had a sense of survivor’s guilt at not facing the same level of struggle I once had and which they were still battling every day.

My “local” effort was to pick someone close by who I could help in a meaningful way–in a way that would have meant so much to me when Jack was little and living at home. My husband’s cousin lives near us and, last summer, was quite pregnant while coping with the vicissitudes of summer (no school or respite care) for her special needs son. Also, she was working part time and also had a tiny yet opinionated toddler and an older daughter who wanted to get out and do all the things all the time.

So I watched her kids one morning a week, which was extremely fun for my little boys and no biggie for me whatsoever. I mean seriously, there were no Code Browns and no one was throwing the remote at anyone else’s head. Easy peasy. We played in the sprinklers, we drew with chalk, we watched The Muppets, and we went nuts with stickers, markers, and Oreos (not all at the same time. It was honestly super easy and enjoyable for me. But for these kiddo’s mom, it was the day she told me she looked forward to all week. She could get things done and catch her breath and she knew she would survive.

I guess the moral of this story is, Jack taught me how to see someone in need and how to offer exactly what they needed. He’s the real MVP. Thanks, Jacky boy.

Focus on Sleep

I’m a big believer in the ability of sleep to heal. All of us do better, think better, act better, and feel better when we are deeply rested. And while sleep can be elusive when you have a special-needs child, it is possible to find it in various iterations. But it has to be a priority.

Nap times and bedtimes were sacrosanct during my kids’ early years. Part of this was for them. Mostly, it was for my sanity.

Forgive People When They Say Stupid Things

People often said irritating things to me when they learned of our parenting struggles. They’d hear about the Code Browns and tell me how one time their kid had a diaper blowout that stunned and horrified them. Or when my kids were irrationally picky or having meltdowns, they might tell me that their child did that sort of thing, as well.

And while it felt like they were invalidating all my pain by comparing their typical child’s one-time poop event or age-appropriate occasional tantrum with our daily pathological struggle to simply exist, I could see that they didn’t mean to hurt me. They were actually trying to connect with me and empathize, even though their efforts were ineffective and misguided.

Sometimes people don’t know what to say, and so they say something wrong. I try to forgive these gaffes by focusing on the person’s intent, rather than their actual words. Are they trying to understand and care about us? Then that’s what I hold onto.

There inevitably will be people who say ridiculous things that make you want to turn and walk away and keep going until you get to the airport and then board a plane for anywhere that isn’t where that person is. But for my own sanity, I don’t let myself hold onto those comments. Clueless comments are just that–clueless, meaningless, not worth fretting over. Those folks don’t know the reality of your life, so go ahead and let their uninformed opinions go. You know what your life is actually like, and so does God. This is enough.

Do the Needful

My husband says this phrase when he’s trying to get our boys to man up, be responsible, and follow through. When things get hard, when you don’t know how to proceed, when you’re really weary–do the needful.

To me, this means choosing to a) prioritize, facing the most pressing thing first, and b) power through the ugly things because life be like that sometimes, and because then you can move onto something nicer.

Just do what needs doing. Don’t do everything. Do the important thing. Do the pressing thing. Do the difficult thing. But do it one piece at a time. It’s the opposite of doing everything right now, and perfectly.

It’s a patient, neutral, unemotional approach to facing chaos and difficulty.

This is a lot of advice that nobody asked for. So. Much. Advice. Yikes.

Now that you’ve read this giant post, you really deserve a crisp Diet Coke. You’ve earned it, baby. Go on, treat yourself.

xoxo

My Campfire of Faith

A friend asked me to speak today for (wait for it) TEN MINUTES of her Relief Society lesson. Because I love her a lot, I said okay. First, we watched the talk Campfire of Faith by Elder Gerrit W. Gong, and then I was instructed to respond to it with my personal spirit-led insights. It was an exercise in hearing what the spirit is telling us, beyond what is being said out loud. What follows are a few of my notes, but I actually didn’t say any of this during my remarks in the lesson haha. Whoops. This is some of the stuff I didn’t say, but which nevertheless is real. Anyhoo, happy Sunday.

Jack’s childhood was the most difficult time of my life. Period. It was simply so hard. In case you haven’t been reading this blog for a hundred years, I can update you on a couple of the highlights: basically we couldn’t take Jack places because he was overwhelmed and had difficult-to-control behaviors (this made us hermits, basically), and our lives were characterized by Jack’s toileting issues. Jack created hazmat situations on the daily, that we referred to as Code Browns. He was a regular Poo-casso in his bedroom, in the family car, in the hallway, in the living room, and (once) on the school playground, blech.

As he got bigger, the Code Browns got worse. We consulted every expert with no success. The psychiatrist, the behaviorist, the pediatrician, the gastroenterologist–they all wanted to help, but nothing worked. Ultimately, one doctor told us that our best bet would be to never ever ever ever leave Jack alone, because that is when he created his poop masterpieces. This specialist didn’t think this was great advice, but it was all she had to offer. But never leaving Jack unsupervised was impossible. We had what felt like a thousand children, all with difficult needs. We had to make dinner and clean it up, buy groceries, do laundry, earn a living, drive people places, and you know, sleep sometimes.

A few people have messaged me in recent months and asked how we turned these toileting behaviors around. They know someone going through a similar thing and want to offer helpful advice. My answer is disappointing, but honest: we never did turn those behaviors around.

Jack’s bowel movements and bathroom activities were the stanky center of my mental and physical energy for more than a dozen years. We did not have a single day when they did not control us. Christmas Eve, Thanksgiving Day, my birthday, his brother’s baptism day, the first day of school–all of these were just another day in the life of Jack’s Code Browns. There was no break.

Jack has lived in a group home for almost two years now. The last time we saw him, I asked his caregivers how the toileting was going. Specifically, I wanted to know if I could get Jack a rug for his bedroom floor, to make it more cozy. Or was I just asking for a destroyed rug? The staff responded that Jack has gone from having daily toileting disasters (like when he lived at home) to maybe having an issue twice a month. We all agreed this was completely terrific! A miraculous improvement!

Then I learned why things have changed in such a positive direction. The staff informed me that whoever is on the graveyard shift pulls up a chair by Jack’s bedroom door at 5:30 AM and listens for him to wake up. The second he stirs, the staff prompts Jack to the bathroom and thus avoids the disasters of yore.

This response floored me. It showed me that Jack’s mental delays and related toileting tendencies have in no way been suddenly cured. The tendency to do his business on the floor hasn’t ebbed. He’s the same sweet little Jacky who would happily create Code Browns whenever he got the chance.

What has changed is his living environment, which includes 24/7 one-on-one supervision by people whose full-time job is to keep Jacky happy, clean, and safe. It’s literally their job. They stay up all night to do it, then they get to leave and live the rest of their lives, with fresh staff coming in to take over.

There was no way to I could provide this for Jack. Even if I had no job, no other kids, and no household to run, I didn’t have a half dozen other versions of me ready to step in and take over while I slept, or used the bathroom myself, or did all the things required for living one’s life.

Jack is happy and healthy and peaceful in his perfect group home. This is our miracle. It’s providing for him exactly what he needs, and it takes a lot of people to make it possible.

After learning about the pee patrol part of the staff’s job, I had this crystalline moment of clarity. I saw that it didn’t matter how hard I tried to give Jack what he needed. I couldn’t give it to him. It wasn’t physically possible for me to do it. God knew this. More importantly, he helped me know it, so we could stop struggling in vain and get Jack the right sort of care.

A few days ago, I stood in the Celestial Room at the temple, where I had another epiphany. In that glorious, light-filled room, beneath a glorious chandelier, I saw the contrast of my life during the thirteen years of parenting Jack at home when poop ruled our lives, and I saw myself at this moment: standing in a clean white dress, with inner and outer quiet, helping people who had come to the temple to worship.

It was a shift from turmoil to peace, and the transformation again woke me to the hands of my Heavenly Parents in my life.

Ten years ago, five years ago, two years ago–I could not have envisioned the beautiful transformation my Heavenly Parents have wrought on my family. During those dark times, I huddled at my campfire of faith. I saw Jesus Christ as my salvation, and I clung to the hope of the gospel. It was turning to this light and warmth that sustained me during those difficult years.

Today I am still feeding my campfire of faith, but it’s no longer in front of me. It isn’t an outside entity with me at the periphery.

It is inside of me.

I’m not speaking in metaphors.

I feel it actually burning within myself, driving out darkness.

It’s fueled by my love of God and the strength of the Savior’s Atonement. The glowing hot embers of my campfire of faith burn off negative influences and dark thoughts. They light the way for me to see things with my spiritual eyes, and they let me live in warmth and peace, not fear.

Elder Gong said, “The light will come when we desire and seek it, when we are patient and obedient to God’s commandments, when we are open to God’s grace, healing, and covenants.”

The dawn did break for us.

I bought Jack a rug for his bedroom, and a vacuum so he can happily clean it over and over again.

And I still have my campfire.

Kindnesses

As I was falling asleep last night, my mind turned unexpectedly to a few kind things people have done for me in the last year or so. It’s a small, important list.

  • A few hours before my dad died, my friend Sarah P. from my writing group, delivered to me a giant wire basket filled with comfort things: a minky blanket, knitted slippers, hand cream, a warm scarf, chocolate, a children’s book on loss, and other beautiful, soft gifts. My writing group didn’t know my dad would pass away the same day they sent Sarah to deliver the care package, but he did, and they’d brought me a basket full of love at exactly the right time. They couldn’t all be there with me on my dad’s last day on earth, but they sent it to me in symbols.
  • One of my friends has begun to mentor me spiritually, and it’s a glorious gift. She spends time listening to me talk about my dreams, which for me are one of the prime methods the spirit uses to communicate with me. She shares insightful articles and General Conference addresses with me. She teaches me about her own spiritual growth, and shares her spiritual insights, which have been both a lifeline and a source of strength for my own testimony. Is there anything more generous than listening and sharing with someone the truest things you know?
  • My mother spends time with my boys and has taught me the important work of listening to children, and being a stabilizing and loving force in their lives. Children need unchanging love. My children particularly need structure and predictable boundaries. She’s always been a source of love and concern, but in the last fifteen months, my mother has grown exponentially in this capacity. People who help children are doing the Lord’s work.
  • When the counselor in the temple presidency set me apart last week for my new calling as an ordinance worker, he (a virtual stranger to me) addressed and answered my MOST PRESSING QUESTIONS regarding faith. He didn’t know the things that weighed on my spirit. But my Heavenly Parents knew, and they sent the spirit to teach me and bring me a sense of understanding and peace. I guess what I’m saying is that while it was lovely of the counselor to extend the call to me and to give me a blessing, I’m mostly glad he listened to the spirit, who told me all the things I needed to know—things I hadn’t really shared with anyone. I hadn’t spoken them aloud. But God spoke back to me, and gave me peace.

Unsolicited Advice. You’re Welcome.

I’ve had quite a few conversations with fellow special-needs parents over the last few months, which have made me introspective about the things I’ve learned in my years of disabilities parenting. I sat in a pediatric rehab unit gym this morning and watched Truman crush it at occupational therapy, and I had the idea that perhaps I should write a post specifically about what I learned, what I did, and what I’d recommend based on my experience.

My attitude toward unsolicited advice of any nature is “No thanks.” And also, “Please leave me alone,” and yet, here I am, typing away, with the important distinction being that a bunch of people HAVE asked me for advice. And there’s the fact that I’m not tying you up and forcing you to read this. Feel free to keep scrolling. Or go read something else! You do you, sis.

Before I begin, a caveat. No two kids with special needs are alike in their abilities or circumstances or needs. What has worked for us may not work for you. I do not claim to be the expert on everyone’s situation. I know essentially nothing about raising a medically-fragile child or handling seizures or Oppositional Defiance Disorder or so many other things that so many other parents face. I can only tell you about my experience. And if you want to read it, go for it.

So, in no particular order, here are some possibly useful things for people facing disabilities parenting to know:

Getting a Diagnosis is a Good Thing

Sometimes people don’t want to get their child assessed because they don’t want to know. They don’t want the label or the stigma. They want to ignore the issues and pretend they aren’t there, which I get. It’s human to hope that a kid will outgrow their deficits.

Jack was diagnosed with his rare syndrome at seven months, and with autism at two and a half; both these diagnoses left me utterly gobsmacked. He was our completely precious baby boy! We loved him perfectly! How could he have these huge lifelong issues?! When he was little, I didn’t like telling people about his diagnoses because I wanted them to see Jack as I saw him–for who he was–not for his disabilities. But time taught me that the more that people know about a kid’s special needs, the more understanding and helpful they are. When we have more information, we as humans are more aware and less judgmental.

An example of this happened at the park when Jack was about three years old. The playground was crowded that day and Jack was at the top of the slide, ready to go down. Meanwhile, there was a backlog of kids on the slide. It was a child’s version of a traffic jam. Waiting has never been in Jack’s wheelhouse, so he started kicking the little girl who was closest to him. He was above my reach and I watched in horror as his sneakers made contact with the top of her head, her back, and her arms. The girl’s mother started shouting at Jack to stop.

The clogged slide cleared out and as the girl slid down and out of Jack’s reach, I apologized to her and her mother and told them about Jack’s autism. The mom instantly transformed. She went from angry to compassionate in a split second and said, “Don’t even worry about it. She’ll be fine. She sees worse with her brother every day.”

I wasn’t trying to excuse Jack’s bad behavior. If my child were being kicked by Jack’s huge hobbit feet on a slide, I’d be upset too. I was trying to provide context, even as I worked to fix the situation, and this mother responded with so much grace and forgiveness.

In the same vein, having a diagnosis opens doors for accessing school, medical, psychological, and supported-living resources which can dramatically help your family. When each of my three boys who are on the autism spectrum were diagnosed, I felt strongly that nothing had changed. They were the same boy before and after the diagnosis. What changed was that we as parents were now empowered to get them the help they needed, which leads to this point…

Behavioral Health Resources are a Critical Piece of the Treatment Puzzle

There is only so much that a school, or early intervention, or a pediatrician can do to help a kid with behavioral health issues. I was resistant to the idea of having my kids see a psychiatrist because I didn’t want to medicate them. I’m going to be frank with you, here. No one births or adopts a baby, kisses their heads, and thinks, “I hope one day I can give you mood stabilizers, SSRI’s, or antipsychotic drugs.” It’s no one’s dream. But the reality is that these types of medications are a gift from heaven which can help your child cope, function, and thrive.

If you don’t see prescription drugs this way, again, try all the oils. Try all the natural treatments. Use whatever alternative approaches which strike you as viable. If they work, great. But if they don’t work, it’s okay to go outside of your comfort zone and try engineered, tested, and controlled medications.

It’s silly that in the year 2019 we still have biases against medication for mental health issues, when we don’t judge people who use insulin, chemotherapy, or blood pressure meds. I mean, really. Why do we hold internal resistance to pharmacology which improves people’s lives? My dad, a gastroenterologist, was a major fan of prescription drugs as modern miracles, which is evident in one of his favorite catchphrases: Better living through chemistry.

His theory was that we don’t have to suffer needlessly through pain or other symptoms which Western medicine has the ability to alleviate. I have always felt that my pioneer forebears would totally have gotten epidurals if they’d had that option. I’m 100% certain they would have used antibiotics to treat their kids’ ear infections and strep throat. I descend from people who believe that modern medicine is proof that God loves us. The end.

And yet, because Jack’s brain and metabolism is so radically different that most people’s, we have had limited success with his medications. They provide subtle help with his mood and behaviors. They do heal his ear infections and treat his chronic gastric concerns. They weren’t a magic bullet that cured all our problems, but they were and are a part of the treatment that help Jack live happily.

Medications have been life-changing for my other sons. I can honestly say that anti-anxiety meds have saved us and allowed my kids to live the big, amazing lives they were meant to live.

Therapy is Really Important

For the last fourteen years, we have been continuously involved in regular therapy of one sort or another. Behavior therapy allowed Jack to be potty trained and to peacefully coexist with his then-infant brother. It didn’t magically fix all our problems, but it gave us the tools and steady growth to face them for another day.

My younger boys have participated in social skills classes, speech therapy, and occupational therapy, as well as working on occasion with a psychologist to learn strategies for progressing. There was a season of my life where therapy controlled our family. It was omnipresent. It was expensive. It was exhausting. But without it, we wouldn’t be here. My boys changed through therapy. Our family learned from therapy. It held our hands and led us out of darkness and hopelessness to a big, bright, better present.

Don’t Compare Yourself to Other Parents

This is stupid cat-poster advice that is actually life-changing, if you can fully absorb it, believe it, and practice it. And it’s the sort of thing people probably said to me over the years, but which I didn’t internalize until I had my first legit spiritual journey a few years back. I didn’t want to compare myself to other parents, but I did it anyway, both subconsciously and overtly.

I used to hold so much contempt for parents of neuro-typical kids. I realize that this makes zero sense, but I would look at people and think, “Do you even know how lucky you are and how easy you have it?” This is a terrible way to look at people, on many levels, most especially because you really don’t know what a person is up against simply by glancing at their life from the outside.

I even compared (and condemned) myself in relation to other special-needs parents. They seemed savvier than me. They had more energy. Their kid was special, but not aggressive/nonverbal/beyond-the-pale special. Their houses didn’t look like an orphanage because their kid wasn’t utterly trashing the place. Their kids could read and talk, didn’t smear poo, didn’t hurt siblings, could travel by car without kicking out windows or attacking the driver.

The bottom line in that no comparison is healthy. It really is the thief of joy. There is nothing positive that comes in comparing lives because all of us are living a divinely-curated experience to maximize our individual growth. When I decided to offer my broken heart on the altar, God allowed me to see that my life was exactly what I wanted and needed, and which would effectively unleash my personal potential.

With this perspective, how could I possibly want anything other than my particular life? And how could I possibly compare my unique kids to other people’s kids, who have their own set of personal hurdles to overcome? Recognizing my life as my ideal growth model was a game-changer. I have a sinking feeling I keep using this phrase. Ugh.

Give Yourself Permission

a) To Grieve. Your child is beloved and amazing, but they’re not what you expected. You have to allow yourself room to mourn what you hoped for in your child’s life. Read that stupid “Welcome to Holland” poem, cry, stress-eat, and scream. This is an important space to occupy before you can more forward.

b) To Care for Yourself. Everyone will tell you to put the oxygen mask on yourself first before helping others. The analogy is overused because it works. Special-needs parents’ needs tend to come last because everyone else’s needs are so pressing. But in order to continue to care for your people, you need to be healthy, present, and okay. Jeff and I religiously held a weekly date night for a season during the worst of our child-raising years. It was difficult arranging and paying for childcare, but it saved our sanity and allowed us to breathe before returning to the crucible. Eating ice cream at the end of the day, retreating to Netflix for a blissful hour, or engaging in a hobby that has nothing to do with kids or disabilities isn’t just refreshing, it’s restorative. Remember the self-care, guys. You need it.

c) To Set Boundaries. You may need to step back from outside obligations which you once handled easily. You may need to limit exposure to family events or other large groups. You may have to change the way you interact with the public–because of behaviors, sensory sensitivities, or potential exposure to illness. These things are all par for the disabilities-parenting course. It may be hard for outsiders to understand why you are drawing back or setting limits or changing the way you do things. But you have to keep your family’s mental health intact, and you can’t do it while projecting an elaborate facade of normalcy. Which leads to…

Accept Vulnerability

So you don’t want to write about everything that’s ever happened to you and put it on the internet. I can’t relate to this. Haha, I’m kidding. I actually really dislike the fact that writing and posting about disabilities parenting opens me up to criticism and judgment. But I do it anyway because God told me to do it, and when I whined about not wanting to keep doing it, God told me to keep doing it.

While I complain a good deal about writing things I don’t necessarily want to write, I can honestly say that I’ve absolutely learned the value of being vulnerable and humble.

Vulnerability opens us up to connection with other people. David Sedaris said, “Usually it’s the worst thing you can admit about yourself that most people can relate to.” I believe that people read this site because I don’t hide the difficult things. I have accepted that being open is scary, but it’s how we connect to, teach, and lift each other.

Humility is vulnerability’s less secular sibling. To be humble is to open ourselves up to what God has planned for us. I did not start my SN parenting journey in a humble place. I thought (wrongly) that God expected me to figure it out on my own and that a good mother earned her blessings and salvation through “successfully” raising her children. I want to shake younger me’s shoulders and say, “Sis. Duh. It doesn’t work that way. Go take a nap and snap out of it. Then we’ll talk.” At which point, we would have a heart-to-heart about humility.

When (about three years ago) I turned everything over to God and begged for Jesus to save us, THEY SHOWED UP AND CAME THROUGH. Everything changed for me. I reaped the power of my covenants. I tapped into the strength of the Savior’s Atonement. My Heavenly Parents released a deluge of revelation, peace, and wisdom into my heart and my mind. All of this changed my parenting life. And me.

Whew.

And finally…

Some Things Aren’t Going to Get Better

While my younger boys have had tremendous growth through meds, school, therapy, and just plain maturing, Jack’s trajectory is different. For some kids who are more profoundly impacted by their disabilities, there isn’t necessarily going to be a day when they stop having toileting accidents, or stop running away, or stop knocking holes in walls.

I once had someone tell me that it doesn’t get better. She was a mom with an adult son who was strikingly similar to Jack. This was actually THE MOST FREEING advice. It allowed me to let go of chasing endless leads which led nowhere. It let me stop spinning my wheels. It gently allowed me to realize that Jack’s life wasn’t going to be in our home, and that was okay.

Puberty is a reckoning for special needs families. Once-difficult behaviors become outrageously impossible. Kids become bigger, stronger, sexually inappropriate, and unmanageable. This may not apply to you, but I’m writing it for those who see their family in this description. Don’t think you can parent away the effects of puberty plus mental disabilities. There are some things you can’t fix. I know you already know this. But I’m here to lovingly say, “You can’t fix everything.”

To Be Continued…?

I’m not sure that I’ve covered everything I should have in this (super long) post. It’s broad and vague, and yet weirdly specific in other areas. Sheesh. If there’s something you think is missing, leave a comment and I’ll write an Unsolicited Advice Part II.

Meanwhile, it’s March now, which means winter is dead (to me, anyway) and I’m looking ahead to spring.

Cheers, dear ones.

An Education

Dear Reader,

I am going to talk about this blog, my worldview, and wearing pants to the temple.

Writing for a nebulous audience has become a particular chore for me, especially since the Coscto Incident of 2017 and the related Internet Skewering Incident (of me) which followed. I used to say that I didn’t care about people’s responses to my writing. If they were shocked or appalled by the Code Brown stories or the aggressive behavior stories, that was their problem, not mine.

My tune, as it were, has changed. I don’t want to talk about my most vulnerable challenges to a hostile audience. Isn’t sharing one’s most sacred experiences with uncaring individuals figuratively known as casting pearls before swine? I am less and less comfortable with writing about my most personal struggles and epiphanies for an internet audience that I can’t even really define.

And yet, this blog is still here. The Holy Spirit urged me to start it and has pressed me to continue it. So I write about things that happen to me. I talk about faith and Jesus, mostly (I suspect) to people who already have faith and who already love Jesus.

Since Jack left for residential care, I do not yearn to write. I still write when I feel there is something I am meant to say, or I write for myself when I’m not trying to craft my words into anything other than basic sentences to convey information I want to remember. I don’t aspire to write books. I truly do not care about publication or notoriety. This may be the result of my own evolution. Perhaps it’s the Holy Spirit confirming to me that my work lies elsewhere. I am completely fine with this.

I currently spend most of my time parenting people on the spectrum (plus one non-spectrum-y teen), teaching writing to the most delightful undergraduates, going to the temple, doing everyone’s laundry, keeping food in the house, and spending time with my widowed mom. I feel confident that this is where my energies are best spent at this moment in time. Specifically, when I ask my Mother and Father in Heaven to tell me how I can serve, these are the answers I get (see above list).

Blogs, you may have noticed, are out of fashion. Even bloggers (those whose blogs are monetized and who sell a lifestyle) do most of their heavy lifting on Instagram, in the form of posts with lengthy captions. The heyday of blogs ended a good eight years ago. But here I am. Begrudgingly maintaining a blog which used to be about raising Jack, but which has evolved into a venue for writing about faith and my perspective on life. Which leads me, Reader, to:

My worldview! I don’t talk about politics here, because it’s so divisive, and Jesus is my focus, yo. But I would like to expound for a moment on how we see each other both because of and in spite of our individualized perspectives on the world.

I had a student last semester who, in the voluntary Student Response to Instruction (an evaluation of my teaching) wrote that something the course should change is “less liberal agenda.”

This response both puzzled and intrigued me. While I know that all of my students do not like me or my teaching style which emphasizes forced interaction and spastic tweets, I mulled over this response for a few days. The student was reacting to my use of topics such as refugees, sexual harassment, poverty, racial inequality, and mental health concerns as a starting point to our discussions which are designed to foster critical thinking, which is one of the university-stipulated course outcomes for the argumentative writing classes I teach.

While I obviously have opinions about all these subjects, I am clear with my students that the point of rhetoric is to see issues from multiple perspectives, in order to better understand the issues and to better convince an audience of your stance.

I am literally a married, straight, white, Christian mother of four whose open-minded, people-first perspective on world issues was too much for at least one of my students.

It made me think of the people online who lost their minds over the Costco Incident. It was as though the slightest bit of discomfort with their challenged perceptions led to an all-out rejection of the messenger.

Being Jack’s mother has taught me to see people as people, rather than as their issues, their labels, or their outward trappings. I’m baffled by the unyielding and rigid perceptions of those who seem to be completely locked in and essentially blinded by all of these peripheral things. Why is this? And why is it so disheartening to me?

This leads to me to my final point, which is to tell you about when I wear pants to the temple.

Reader, I go to the temple a lot, and I almost always go right after teaching. I refuse to teach every day in dresses at 7:00 am when the air is arctic (not that it’s anyone’s business), so sometimes when I go to the temple, I wear dress pants, a blouse, and dress shoes.

The first time I went to the temple in this ensemble, I wondered if people’s heads would explode. I do happen to live in the heart of cultural Mormondom, where folks are less apt to be familiar with any sort of visible variance from cultural norms (read: women going to the temple in skirts/dresses, period). Doing things differently just isn’t done, guys.

What happened was this: no one said anything. The temple worker at the desk looked at my pants, scanned my recommend, and welcomed me to the temple.

When I walked into the women’s dressing room, when I left the dressing room after my temple session, and when I walked through the parking lot, this is also what happened: around a dozen older women stared at my pants. It wasn’t just a double-take. It was a stare, where they stopped walking and cocked their heads to the side. I told myself they were either a) wondering why they haven’t done it yet, or b) thinking I’m a heretic. Bordering on witchcraft, possibly. Because pants, yikes. How dare I.

I asked myself later if fitting into this deeply entrenched cultural norm was so vital that I would be willing to change in a bathroom stall at the university into a dress before leaving work to go to the temple. And I decided that I’m already dressed professionally. I’m wearing nice clothing and my heart is ready to serve in the temple. My Heavenly Parents know this. I am 100% temple-ready.

I am growing so much in my individual ability to access spiritual receptivity. Part of the reason this is happening, I am convinced, is because special-needs parenting has taught me to see beyond what is “normal.” Beyond the culture. Beyond the outward appearance. Beyond the exterior.

Because of my parenting struggles, I am better able to look at people and see what’s inside. I am humbler and able to listen. I’m ready to be taught.

What’s inside people who look or act differently are people who can’t truly be defined as “other,” because they’re all our brothers and sisters.

What’s inside the temple is not a fashion show where pants on ladies are horrifying, but a holy place of spiritual instruction.

What’s inside me is a sloughing off of judgment and resistance to pigeon-holing ideas, groups, or individuals. There’s also a spirit hungry to learn what my Heavenly Father and Mother are ready to teach me.

I learned this, from Jack, and from Charlie, and from Truman.

Reader, I would not trade this education.

Listening to My Dreams

My great-grandma Laura Thueson England has been on my mind.

This is because I’m becoming mildly obsessed with my departed people and all their glorious foibles. I mean, don’t be alarmed, but the fact is that I descend from Princess Annabella of Scotland (born in 1436 in Holyrood Castle, Midlothian) (stop it. STOP IT.), the daughter of King James Stewart and Queen Joan Plantagenet Beaufort. Family history is sort of fabulous.

I also descend from bunches of people who left England, Scotland, New Zealand, and Denmark to emigrate to….(wait for it)…Utah. To live in dugouts and cabins. I’m astonished and blown away at their stories. They did hard things and they did it with faith as their propeller and their rudder.

But Laura England specifically is on my mind. She was born in 1875 in Scipio, Utah, which is renowned for NOT being Holyrood Castle in Scotland, but for being a tiny town en route to Southern Utah (which is to say, it’s not renowned). She married Charles England and lived much of her life in Plain City, another tiny town.

These are the things I know about her: She lost her first daughter at the age of two, her husband died of cancer the day before Thanksgiving at age fifty-two, she cared for her mother and both her husband’s parents in her home at the end of their lives, for many of her older years she consistently took a bus from Weber County to the Salt Lake temple once a week to do temple sessions, and she lived with my mother and was cared for by my grandma Lila at the end of her life.

I also know from my mom that when Laura cared for her mother, Alice Wasden Thueson, at the end of her life, Alice told her, “If there is any way I can reach out to you from beyond the veil to warn you of something, I will do it.” To which Laura replied, “Then I hope you don’t reach out to me.” I mean, right?

The fact is, though, that Laura’s mother Alice DID reach out to her in a spirit of warning or preparedness, in the form of three dreams at three different times in Laura’s life. The first was before her toddler daughter, Loneda, died. The second was before her husband, Charles, died. The third time was also relating to the death of a loved one, although it hasn’t been written about and my one living source on the topic can’t remember the specifics. Which is fine, because the important parts of Laura’s story are intact.

My great-grandmother had revelatory dreams, people.

!!!!!!

I have never felt so connected to one of my departed relatives.

Meanwhile, my dreams have been of the vivid, detailed, and instructive variety throughout the months of January and February (and, frankly, well before that). While I write here about many of my dreams, I don’t write about all of them. There are too many. They would comprise a book. And they are meaningful mostly only for me. Some are pleasant. Some are disturbing. Some are filled with beauty. Some are traumatic.

All of them stay with me when I wake up and leave me with lingering feelings relating to the tone of the dream, and all of them cause me to take stock of what I have seen and felt.

I’ve always been enchanted by dreams as a portal to the subconscious mind. But now I’m fascinated by my dream life as a vehicle for spirituality. I’m learning so much as I simply write down what I see and feel, forgoing the urge to make sense of it or assign meaning to it. My initial interpretations are usually wrong, but if I wait and observe, the actual meaning tends to materialize. Or I have hope that it will materialize.

My dreams over the years have gone from reflecting my fears to giving me peace in turbulence. They speak to me in symbols about my life as it currently is, and as it relates to my Heavenly Mother’s and Father’s plan for my life. It’s the blueprint overlaying the fully rendered art piece of a soul’s potential.

I don’t think this is because I’m particularly special. I think it’s because our Heavenly Parents have big, amazing plans for all of us. Mine just happen to come to me in the form of my dreams, as they did, at least at key points in her life, for my grandmother Laura.

Big Beautiful Breakthroughs

I don’t care much for January, but you guys, this January has been rad. Allow me to explain.

After throwing daily tantrums or silent/Ghandi-esque protests about going to school for six months, Truman up and decided to stop doing that and to instead walk into school like the warrior man he is.

I mean, granted I did have to bribe him with a mythical-sounding 100 MINUTES! of unfettered video gaming after school that day, and I did need to flag down our neighbor, Will, who happened to be walking past our car at dropoff, and I did happen to beg Will to walk in with Truman, and I definitely did vehemently remind Truman about that 100 MINUTES! But the upshot is, Truman did it. For the first time ever, I didn’t have to drag him into first grade in my bedhead and my sweatpants.

When I picked him up that afternoon, he told me, “I’m not scared anymore, Mom.” And also, “I’m ready to go home and have my 100 minutes! of video games.” Hahaha.

Sometimes parenting is slogging through 10,000 miles of frozen/muddy tundra while dragging a belligerent kid along. Occasionally, parenting is a ride at Disneyland–all speed and exhilaration and happiness. And the rare Disneyland rides are that much sweeter because of those 10,000 figurative miles on foot through the frozen north.

I can’t adequately describe my lightness of being at this development.

Around the same time as the school-autonomy breakthrough, Truman also managed to begin staying at church the entire time. For the sake of context, I will simply say that this has been an impossibility for all of Truman’s seven years, plus most of the years Jack lived with us. I’m not asking for pity (nor judgment). This is just how Sundays have been for us. For, like, ever.

But between us learning about how to manage and respond to his sensory processing disorder, and shorter church (the church is true, the book is blue), and Truman deciding he isn’t scared anymore, we are now in the midst of a sea-change, and it’s glorious.

Finally, to complete Truman’s trifecta of amazingness, he decided to stop fighting us at bedtime and just go to bed every night like a docile little sweetheart lamb. Why? I don’t know. How? I really can’t say. But please note that I’m over here giving major thanks for all of this blessed progress.

These developments are undoubtedly related to each other, as they emerged at the same time. They seem to have resulted from Truman turning some developmental corner. Are these positive changes simply the result of time and the river (of parenting) flowing?

Or, I’ve been asking myself, are they somehow connected to the way I have spent my January, which has been to fling myself into devotion and spirituality. Correlation, yes definitely. But causation? I have no idea. Am I being weird in feeling that my attending the temple once every 5-7 days and thus entering a state of deeply instructive openness to spiritual things may have some relationship to Truman’s progress?

My own personal January breakthroughs have been wrapped up in an intense state of inner instruction, which has been my winter camp. The temple has been one major avenue of my own deepening spirituality. The other paths have involved praying to understand and refine my spiritual gifts, writing down any sudden or recurring dreams and impressions, and delving wholeheartedly into scripture.

None of this is groundbreaking. The change is in my enthusiasm for it.

I’m eager to learn.

I think my Heavenly Parents know it, because they’ve responded with SO MUCH INSIGHT.

I hope this all doesn’t sound self-congratulatory. I don’t know why I’m hungering so deeply for more understanding at this point in time. And I don’t know why I’m receiving an outpouring of spiritual instruction, other than I’m asking for it.

The miracle is that my Heavenly Parents are giving it to me.

Maybe there is no connection between my bare-naked cannonball into the figurative pool of spiritual growth, and Truman’s propulsion into greater independence, other than the fact that I feel strongly that they both originate from heaven, and are both real proof of divine love.

That Gauzy Curtain

All right, gather round people of the internet. It’s story time.

Way back when I was a chubby and opinionated preschooler, I had a friend named Alyssa. She was tall, like me, and had deep brown eyes, also like me. We remained friends through elementary school, before aging into different friend groups in junior high and high school. Four years ago, we found each other on social media and have been keeping up with each other online ever since.

But I haven’t spoken to her in like thirty years.

A few weeks ago, Alyssa sent me a Facebook message saying she had a big crazy story to tell me. She proceeded to say that her dad’s wife has a grandson, who we will call Cole, who has autism and who recently moved into residential care. Alyssa happened to hear that Cole lives in the same town where Jack lives. She said to her stepmom, “I have a friend whose son lives in a group home in that same town.” She showed her a picture of Jack from Instagram or wherever and LOW AND BEHOLD, this lady (the grandma) recognized Jack as Cole’s housemate BECAUSE THEY LIVE IN THE SAME HOUSE, PEOPLE.

She told me Cole’s mom (we will call her Catherine) wanted to talk to me because hello, we’ve been through the same mad/wild/heart-wrenching experience of raising a nonverbal, super special, super high-maintenance son and then having to place him in a group home in order to a) survive, and b) get the care he required to be safe and happy. We have literally been there and absolutely done that.

I got Catherine’s number and we started texting each other. Last week, we met for lunch.

It turns out that our lives have followed strikingly similar patterns of making enormous sacrifices in the service of parenting our particular boys. We know all about sitting out from events, trips, family parties, and outings because our boys couldn’t manage it. We understand the difficulty of having to split up constantly with one parent taking the other kids to do “regular family” things, and one parent staying home with the special kiddo. We know the isolation and the cultural gaslighting (if we only used xyz supplements or specialized water or voodoo chants, we would solve all our boys’ problems, so really guys, shame on us). We know from experience that caregiving is an ongoing, emotionally draining, and physically exhausting thing.

We just KNOW.

The long and short of our conversation was this: our boys are exceptionally unique. Raising them has been the fulcrum around which all other points of our lives have moved. Now said boys live in the same house (!) and we have also met (!) which makes us friends for all eternity (!)

But wait, this story continues.

Today I went to Costco, where after checking out with my groceries, I saw ALYSSA OF SAID JACK/COLE STORY in the food court. I haven’t spoken to her since I was eleven. And there she was, right in front of me.

We had the most delightful conversation and I was able to embrace her (twice!) and thank her in person for seeing this connection between our two families. She was the link between us, and she noticed it and brought us together. The emotions were bubbling all over the place, with a fizzy tank of gratitude dominating the entire encounter.

On the drive home, I thought about the errands I’d run that day, and the billion people at that particular Costco at that exact moment, and the beauty of ME seeing HER in a serendipitous meeting of once-childhood friends whose families are now unexpectedly united.

My soul felt alight.

It was incandescence emanating from a deep-seated awareness that what had transpired wasn’t coincidence.

It wasn’t even just God being mysterious and lovely.

It was people who love Cole and Jack–relatives, ancestors, our kindred dead, angels beyond the veil, call them what you will–who rallied to identify the link in our families. And having found Alyssa, they nudged her to reach out and bring us together.

This is how it happened. I know it.

How do I know it, you ask? Keep listening, I’m not done.

There’s one more part to this story.

Last night I dreamed I opened my dad’s journal and was excited to finally read it.

My mom gave me his journal when he passed away. It’s a gorgeous leather number filled with handmade paper. He wrote exactly three entries in it in 2012. I hadn’t read it because I couldn’t bear the thought of reading those three pages and having it be over. That would be it. I just could not do it.

But then I had that dream, in which my mom was standing in front of me and we were both so jazzed at the prospect of reading those three entries.

I remembered this as I drove Charlie to school in the 17 degree morning. I remembered it again as I did my workout. I remembered it when I went to the school a little later to volunteer. I remembered it yet another time as I drove to Costco. I thought about it after I ate lunch and sat down to write, at which point I finally retrieved the journal from my desk drawer and opened it up.

I read it.

It’s all about his family. Us.

He wrote two of the entries while visiting Yellowstone, reminiscing about the decades of memories in that most magical of national parks. He loved it there so much.

The other entry he wrote on his 43rd wedding anniversary. He expressed deep thankfulness for my mother and for the loving and good person she is. He spoke of the astonishment he felt at his life. He did not anticipate so much beauty and happiness.

I almost wanted to be a little cross, and lecture him for not filling that lovely leather-bound book with hundreds more entries. But I did not feel cross.

I felt tranquil.

He delivered a message to me and the message was this:

I’m still here.

I see you.

I know what’s happening in your lives.

We are a family, and I am working from my new estate to help all of you.

Jack, Cole, Catherine, Alyssa, my dad & who knows how many others I can’t see–we are all players in this unfolding romance.

Jesus wrote the script and our loved ones are saying their lines from behind the gauzy curtain that separates us.

It’s a play about love and it’s real because, you guys, “angels speak by the power of the Holy Ghost” (2 Ne 32:3).

They are speaking to me. To us.

When I still myself enough to listen, I can hear them.