Author Archive for Megan

Waning May; Tiny Letters

Dear Reader,

I’m still here, just not here, on this blog much, which you likely already noticed. I don’t have much to say, currently. This is how one loses blog readers, I am told. Reader, tell that to my psyche which is just quietly doing its thing and can’t be bothered to write stuff.

Dear Month of May,

You are rainy this year, and cold. You are full of doctor’s appointments and therapy appointments, and specialist appointments for my children. You are rolling forward like a freight train to the end of the school year. You are a beautiful month. You are ephemeral. You evaporate into the ether before I feel I can fully enjoy your beauty. Ah, May. You’re a slippery, lovely thing.

Dear Giant Church Doctrine/History Books I am Currently Reading,

What is it with you guys and your old-paper-smelling ways that sucks me in? Why haven’t I cared about you before? Did you always intend to just sit there fallow on the shelf until I had another intense spiritual journey, and then you felt you’d make your move? Also why am I treating ye olde inanimate objects like sentient beings? I’m currently reading three of you bad boys right now, for a combined total of like 1800 pages with copious end notes. And dang it all, Giant Church Books, I’m enjoying you. Does this mean I’m boring?

Dear Early Church History,

You are really a lot to take in, you know? I’m inspired, but also aghast at so much of the difficulty that transpired during your watch. And I just ordered Laurel Thatcher Ulrich’s newest book today, so I’m clearly not ready to be done with you. And no offense, Early Church History, but I am really glad I did not live when you were roaming the earth. I’ve always felt I would’ve made an awful pioneer, what with my love of indoor plumbing and hair product and automobile travel and NOT being attacked by mobs. Blessed, honored pioneer, indeed.

Dear Soda,

My back is once again telling me I need to let you go. But I love you, soda. And I would like to ask the universe if I am not allowed to have ONE vice. Am I? Allowed one vice? (The universe is telling me “sure, but your back will hurt, so yeah”). So, dear crisp nectar, I’m not giving up on you. I’m just backing away slowly, a bit.

Dear My Sons,

We’ve had the talk about summer, and the routine, and the expectations. We will again have this talk, possibly on repeat. Let’s all stay calm and not fight, okeydoke?

Dear Parenting,

I’ve never been dismissive of the wild ride you’ve taken me on. It took you some time to break down that entitled naivete I exhibited in the beginning, but we got to this place where I accept that you are this insane melodramatic rodeo clown entity in my life. And you aren’t languishing, dear dear dear difficult Parenting, even as the guys get bigger. I found that out yesterday as we found a new therapist for a certain kiddo who doesn’t want to go to therapy or be different or have autism. You are really something, Parenting. I’m not going to say what you are, but you really are SOMETHING.

Dear Freezing Cold & Wet May Weather,

I get that you do what you want, but I’m just going to come out and say it. You’re kind of a bummer.

Dear Me,

I like that as you enter the more fully entrenched years of your forties, you are embracing it by being you and liking it. Exhibit A: your bangs. They’re cool because you think they’re cool, and you’re like, “look at me I’m fabulous bangs bangs bangs.” Exhibit B: You’re less tuned into the toxic messages of diet culture and consumer culture and the you’re-not-good-enough culture of capitalism. In this house, we do not vilify carbs or succumb to the insidious idea that we are defined by our possessions/looks/hobbies/travel. Come to my house, we happy here. Exhibit C: Your politics, which we won’t talk about here, but which have evolved and which are the result of more critical analysis and thought than before. Good job, you.

Dear Thirty Minute Nap I Took Today,

I love you. You saw me and you gave me exactly what I needed.

Hey May

I submitted my grades yesterday, thus wrapping up another semester of teaching writing to university students. I realized that during every single semester that I’ve taught over the last four years, events in my life have presented some variation of a huge, hulking challenge that has threatened to derail me.

In other words, there was never just teaching. There was also my life going up in differently colored flames due to one thing or another.

I have to imagine that the same is true for my students. No one goes to school (or work or anywhere) in a vacuum. We carry our hardships within us; they are part of the fabric of our being. It’s something to be aware of, and is a great justification for kindness, yo.

Anyway, as I reflected, I pulled out my phone and made this cheery little list of the things that have (for me, outside of class) characterized each semester for years:

  • teaching while Jack lived at home and was literally beating up me, his brothers, and the appliances/windows/sinks/toilets/whole house
  • teaching while placing Jack into residential care
  • teaching while grieving
  • teaching while my dad was dying
  • teaching, again, while grieving
  • teaching while Jack was being hospitalized in a neuropsychiatric unit
  • teaching while Jack was being kicked out of his group home placement and transferred to another one, three hours away
  • teaching while handling the sensory issues and neuroses of various other children, including but not limited to being able to: eat food, go to school without melting down, be flexible and less rigid about ideas/routines/situations, and be responsible enough to handle a bit of independence
  • and, inexplicably, teaching while undergoing an inward spiritual awakening that exceeds everything I’ve ever learned before about spiritual things

Occasionally, in the midst of a semester, I’d think to myself that it would be really kind of amazing to not have some outside tragedy happening at the same time, like clockwork, predictably, all the time.

Now I think I’m at a point of accepting that a) apparently this is how my life works, and b) God has seen me through each semester plus tragedy so it’s all going to work out somehow, someway.

I’ve written extensively in the past about each of the things on the above list, except for the last bullet point. To clarify, I have written continuously over recent months about the intense and consuming awakening of my spirit, but I haven’t shared it. This is not because I’m hoarding the things I’m learning. It’s because I’m not at liberty to share them.

I’m letting the spirit lead out on this one. And currently, what I’m getting is this: be quiet and listen.

Inward things aren’t visible, and yet they’re real. This is an education.

At some point, I might be at liberty to talk about it. For now, I’ll just say that I’m learning to be more attuned to frequencies which aren’t spoken aloud. If this blog seems a little quiet and reclusive, this is why.

So in regard to the semester which has just ended, my non-teaching life wasn’t facing major tragedy (yay) but it was a time of major change.

To end this (possibly unsatisfying post), here are a couple of other observations courtesy of moi.

  • I love my job. So much. Working with a rotating bunch of undergraduates every semester is delightful and I love them. Teaching is such a gift in my life, and knowing my students and former students brings me happiness. They are amazing humans.
  • In the seven and a half years since Truman’s birth, which was the unwitting beginning of the worst years, I’ve been to the depths and back. But if I hadn’t experienced the trauma of a preemie, two more kids with special needs following Jack’s diagnoses, living in Poo Town, and the onset of puberty making Jack super violent, I wouldn’t have come to the point of complete submission to God’s will that I did. Perhaps I’m possessed of a prideful nature. Maybe we all are. Whatever the reason, I needed to have my life leveled in order for me to be ready to receive the big lessons my Heavenly Parents were waiting to give me. So, I’m grateful.
  • Through recent experiences I am learning to understand my children better and wow, they are remarkable people. Maybe this is the point of all this–knowing my people for who they really are.
  • Change is possible. Growth is possible. Miracles are real, and my life is Exhibit A regarding this.
  • I love cookies. Frosted sugar cookies. Big, chewy chocolate chip cookies. Chocolate fudge cookies from Sodalicious which are basically brownies pretending to be cookies. I love them all. This is neither here nor there. It’s just the truth. I stan the cookies.

Wednesdays at the Temple

I spend the better part of each Wednesday working as an ordinance worker in a temple of the Church of Jesus Christ of Latter-day Saints. It is busy and tiring and has a really steep learning curve, but it’s also pretty ding-dong amazing.

The temple is the MOST instructive place on the earth, and has taught me a few things, aside from the mega-insights inherent in the sacred ordinances themselves. Read on if you’d like to hear about my non-sacred-but-still-valuable lessons from being in the temple a whole bunch.

People With Special Needs Go First

Obviously this is the first thing I picked up on being in the temple. I mean duh. This is the sort of thing my parenting life has conditioned me to notice. And when I saw how the temple handles anyone who has special needs of any sort, I kind of wanted to stand up and loudly clap (except just in my mind, since the temple is a quiet place).

This is how they do it: workers are trained to watch for people who need accommodations or additional help, whether it’s due to physical limitations, first-time temple attendance, or speaking a primary language other than English. The workers ask the individuals how we can best help them. Then, those who help with the temple transitions are made aware of these people and their needs, and are enlisted to step in and assist.

Here is the part that I really love: when it’s time to complete the ordinance, THE PEOPLE WITH SPECIAL NEEDS GO FIRST.

Guys. This is not a drill. No one makes the person with the special need feel “other” or “less than” or even like they’re causing problems for everyone else. They don’t have to wait in shame for all the “typicals” to go first. Instead, everyone else waits like 90 extra seconds until those who need a bit of extra assistance are set.

As Jack’s mom, I find this approach so completely beautiful. Jesus (and his army of proxy ordinance workers) sees the extra needs and rushes to meet them. And the people with distinct needs come first, before the ninety-and-nine, if you will.

We’re all occasionally the figurative “black sheep.” The temple teaches us how to approach and help each other when we are the one needing more assistance than everyone else. Basically, if you want to do as Jesus does, here’s how we can do it: we notice, we ask how we can help, and we offer that particular sort of help immediately. Can the whole world implement this approach? I mean seriously. K thanks.

A Culture of Positivity Accomplishes A Lot

I am currently being trained by two women who are veteran temple workers and basically extraordinary leaders. There is SO SO MUCH to learn in the temple, and Sister M and Sister B are making it joyful because they are patient, thorough, and incredibly supportive.

I’m seeing through this experience of memorizing the lots and lots and lots of words of the ordinances that people flourish when their mentors treat them with encouragement and love. There is some sort of magical, invisible strength that crystallizes when people provide a structure of real support in this way.

It’s essentially counterproductive to approach leadership in any other way. Sorry guys. I don’t make the rules.

I love my trainers and my fellow trainees, and we are just a little sisterhood of the traveling words of encouragement.

An Orderly Place is a Peaceful Place

Today we were learning about how to handle all kinds of exigencies—various rare situations which aren’t likely to arise, but if they do, there is a plan in place and now we know what to do. At one point, I commented, “This covers everything. It’s so organized,” to which my friend Carrie replied, “It’s a house of order.” Hahaha, exactly.

I think the lesson in this for me personally is that being mindful of possibilities and issues, and systematically preparing for them doesn’t make you boring and worrisome and predictable. It makes you peaceful, because you’re ready for whatever wild things come your way.

“Behold, mine house is a house of order, saith the Lord God, and not a house of confusion.” Doctrine & Covenants 132:8.

This idea speaks to the concept of finding clarity in the calm, steady, peaceful, and enlightening habitat of the temple. Enlightenment is the opposite of confusion. God creates order, intelligence, and possibility, and gives us an open-ended invitation to come, sit with it, partake of it.

There is Power in Internalizing Sacred Words

Did you ever have to memorize a Shakespeare sonnet or a poem in school? I did, and now, all these million years hence I can still recite The Bard’s Sonnet 29 and Robert Frost’s “Stopping By Woods on a Snowy Evening” on command. Thanks, Mrs. Joyce Baskin, Honors’ English teacher of champions. Those lovely lines of verse are stuck in my memory.

I’m finding that the act of committing the words of Jesus Christ to memory has helped me think about them deeply. I’m examining the language and the symbolism. The promises afforded in the temple ordinances are spoken with gorgeous imagery, and now that they are lodged in my brain, they’re with me for good. I find myself mulling them over and drawing strength from them.

Memorize. Jesus’s. Words. Yo.

They’re powerful and they will build you up.

Revelation is Personal and Faith-Driven

Most of what I have learned in the temple isn’t spoken out loud. It happens internally when I’m in a quiet, entreating, devotional state of mind. It happens because I’m in a holy place and I’m asking, then listening.

This is the beauty of truth.

God will reveal it to you when you’re ready for it. It’s a personal matter. It doesn’t have to do with anyone else. It’s individual, and it happens in response to our belief that it will happen. This isn’t to say that understanding comes all at once, just because we want it to. Humans learn things line upon line, and in my experience, sometimes there are years between each of those lines.

I dwelt in a place of relative darkness for about a dozen years as Jack and I grappled horribly with the limitations and difficulties of severe disabilities. In recent months though, I’ve seen the complete accuracy of this verse of scripture, “That which is of God is light; and he that receiveth light, and continueth in God, receiveth more light; and that groweth brighter and brighter until the perfect day.” Doctrine & Covenants 50:24.

Light attracts more light.

Humility invites more instruction.

Understanding welcomes greater insight.

And it all turns on the hinge of the Holy Spirit speaking to our individual spirits.

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.