Archive for the ‘Religion’ Category

A Preface

If you are under 18, please talk with a trusted adult before proceeding. This series addresses some adult topics with adult language. Thank you.

Saturday, May 11, 2019

I woke up on the loveseat this morning. It’s one of my new favorite spots to sleep, along with the couch and a power recliner my dear friend loaned me in preparation for Boob-ma-geddon. Each spot works for keeping me in its own little subset of intermittently comfortable positions, depending on what hurts most and least at the moment. Maybe that sounds like I’m hosting a little nocturnal pity party in my family room, but honestly, it’s more like a constantly evolving game of Nap-Themed Human Tetris. Each spot works with the right positioning. All I have to do is pair the right position with the right location, and as those locations are all in a 300-square-foot space, I’d say I’m pretty much winning at day-sleeping and general post-op laziness right now.


Read Full Post »

Apparently, you can find anything and everything on Pinterest.

Apparently, you can find anything and everything on Pinterest…including things you thought were your own unique ideas, handily made into memes.

For years, I’ve considered myself an atheist. Jew-“ish” so to speak. A cultural Jew with no real desire to practice the faith in which I was raised because, quite honestly, I felt Will’s autism was proof enough for me that there is no God. People would tell me that God doesn’t choose who gets autism or cancer or diabetes; He simply helps and guides us along the way as we handle these challenges. Yet in the next breath, they would tell me that God has a plan for Will; a “special plan for these special children.” People would tell me that, “God chooses special parents for special kids,” and that, “God chose you to be Will’s mom because He knew you could handle it.” None of that jived with God not choosing who gets what in life. And so, I saw all of that — 100%, absolutely, positively all of that — as completely false. I took them as the social niceties that people say when there really is nothing one can say. It’s an untenable situation. What else could a person politely say? The sentiment and empathy I appreciated, truly. I knew many people who shared these thoughts with me meant them from the depths of their hearts, and I was grateful. But from a practical standpoint, I just didn’t buy it.

I went along for quite a while that way, my atheistic Jew-“ish” self, living without God but with morals, and doing just fine. And then one night, I got into a conversation with my friend, Nathan, whose spiritual journey is one that fascinates me more each time we discuss it. And Nathan made some very good points about what a terrible atheist I was, seeing as I still believed, having experienced it myself, that there is more to this world than simply that which we can normally see and feel and hear. He suggested that perhaps I was not so much an atheist but someone who didn’t believe in the Judeo-Christian “version” of God.

It was such a simple concept. What if the energy of the universe, the force of life itself, what if THAT is God? Because even for someone like me who believes in evolution and the Big Bang Theory (Bazinga!), even from a scientific standpoint, I agree that there has to be more. If we all evolved from the initial Big Bang, what precipitated that event? From what did that first bit of space dust emerge? That is, if we know it is true that we can neither create nor destroy matter, then where did the first matter come from? What started everything that led up to the Big Bang? Nathan really had me thinking.

Even with those conversations, though, I still considered myself Jew-“ish.” I didn’t worship or go to temple. I didn’t pray. I didn’t see a point.

And then Julia started asking to go to church. I attributed this to the fact that my boyfriend, Rob, has three kids, and they love their church and go regularly. So Julia had heard a lot from them about how fun church is, and I’m pretty sure she imagined it to be some kind of indoor park where kids go to do fun stuff and grownups aren’t allowed. We hadn’t been to synagogue in Kansas City yet, and as much as I am open to my children adopting the faith and belief systems that work for them and bring peace to their souls, I wasn’t quite ready to take Julia to church when we hadn’t even gone to temple. It seemed … wrong.

Time passed, and suddenly, it was Spring, and we had been in Kansas City nearly a year. Rob’s parents invited us to join them at church for Easter services, which I had never attended before, and just like that, Julia and I went to church.

Julia later told me that Easter was, "The worst day of my whole entire life." Apparently, church was not the kid-topia she'd expected!

Julia later told me that Easter was, “The worst day of my whole entire life.” Apparently, church was not the kid-topia she’d expected!

I anticipated spending a couple of hours sitting politely, perhaps staying busy keeping Julia quietly occupied. I thought it would be interesting to see what Easter services entailed, but more from an anthropological standpoint than anything else. I have rarely been so pleased to be wrong.

From the very beginning, I felt a sense of warmth and welcome at the United Methodist Church of The Resurrection. Simply walking into the building as people flowed in, smiling and welcoming one another, was uplifting and peaceful. The orchestra and choir music felt oddly familiar and comforting, despite the fact that I had never heard most of the songs before. But there was more.

The pastor began to speak, and I was completely focused on his words. There had been shootings in the area that made national news the previous week when a man killed innocent people at a Jewish retirement home and then on the steps of the local Jewish Community Center. The pastor had met with the Center’s Rabbi, a longtime friend, to discuss how they could support the community through the tragedy. They were both particularly invested, as the shootings took place on the Rabbi’s turf, so to speak, yet the man and his grandson killed at the JCC were not Jewish. In fact, they were members of the United Methodist Church of the Resurrection.

It was no surprise, then, when the pastor explained that he had altered his planned Easter sermon, taking into account the fact that he had presided over the funerals of two members just two days prior. His sermon, however, was still seamless. He flowed from his discussion of the week’s events into the importance of unity, acceptance, community, and compassion. He talked about civil rights and the blights of bigotry, hate, and prejudice. He spoke of the need to meet such evil with love so that every act of violence or discrimination creates an unintentionally positive ripple effect of love, tolerance, and peace.

This, I felt, was what God is about, whatever form God may take. Even if God is only the collective concept of good, existing like Santa Claus as a motivating force that inspires people to be better, kinder, more loving and accepting, then so be it. Perhaps, I thought, the idea of God is enough.

Of course, the pastor was nowhere near done. He segued into what was likely the bulk of his planned sermon, making the eloquent connections of a seasoned public speaker, discussing Jesus and his works. In particular, he focused on the women in Jesus’s life and how they supported his ministry both logistically and financially. He spoke of Mary Magdalene and how she was an unmarried woman, living alone, which, at the time, would have meant she was both without any male relatives to take her in and without any man willing to, “take her to wife.” Based on other accounts of her life, the pastor posited that Mary likely suffered from a psychological, behavioral, or personality disorder, and that contributed to her unmarried state. The result was that Mary was wretched in society’s view. She was of the lowest status, an unmarried, unmarriageable, unstable woman, living alone. And yet, when Christ was resurrected, the pastor continued, Mary was the first person to whom he reportedly revealed himself.

This led to a discussion of Jesus and how he valued and surrounded himself with those whom society would often dismiss or undervalue. This, for me, was of particular interest. What would society have done with Will at the time? How does society view and value him now? In the pastor’s words, I heard loud and clear that Jesus would see the value — the inherent, individual good — in my son.

Of course, this was all well and good. It didn’t suddenly make me a Christian or a person of religion at all. It was inspiring and thought-provoking, but a single sermon was not going to shift my world view.

And then the pastor spoke about the very issue that had, for so long, been the crux of my psedudo-atheism: when bad things happen to good people and how that jives (or doesn’t) with God’s plan. I really could not get over how many of my personal challenges with religion were being addressed in this single sermon.

The pastor circled back to the week’s events, talking about how these horrendous, unthinkable things had happened in our community. People had been killed. People were mourning. People were searching for answers, and one of the questions was, inevitably, “Why?” Why would  God allow this to happen? How could this be part of God’s plan? I expected the pastor to say that it’s not for us to know, or that God works in mysterious ways, or that all would be revealed in the next life — essentially, nothing helpful, because these were the answers I had always gotten about Will’s autism. And again, I was wrong.

The pastor said, essentially, that this was not God. Did any of us think, truly, that God wanted a young man and his grandfather to be murdered? Did any of us think that God wanted someone’s heart to be so hardened and twisted and filled with hate that he would go out and commit such a crime? No, he said, this was not God. This was man. This was a result of man exercising free will, and, he said, it grieves God to see it.

And therein lies something I have also long believed: Man has free will (whether granted by God or a product of evolution). And we have free-willed ourselves and our planet into such a toxic state that we have rampant challenges such as no generation before. Cancer and autism and all manner of autoimmune disorders and on and on and on in numbers never before seen in human existence. And that’s not God. That’s man. That’s man going around without regard for the consequences, abusing his free will all over the place.

So, we had finally gotten to the heart of my conflict with religion. Free will versus God’s plan. And suddenly, I saw that the two could co-exist. The pastor spoke so confidently about the fact that God mourns, God grieves, at the horrible things we do to one another and the planet, and yet He does not revoke our free will. Instead, He continually gives us the tools we need and the opportunities to move in the right direction and make better choices.

God grieves. That’s what I heard. God grieves. He has this grand plan that we go about disrupting, and he continues to pave new paths to help us achieve His desired ends. This made sense to me, because I had long since dismissed the, “All things happen for a reason,” way of life. But with this twist, I thought, ok, everything happens for a reason, but sometimes the reason is because man has exercised free will. Just because things happen for reason doesn’t mean it’s God’s reason. Fair enough. And I realized, therefore, just because there is bad in the world, just because bad things happen that I cannot reconcile with a merciful God’s plan, that does not negate the existence of God in some form, whether it be a sentient being or a collective idea or the balance, energy, and force of the universe.

The entire sermon left me in deep contemplation. Not only had the sermon itself left me with much to consider, but the feeling I had in the church was transcendent. I felt closer to God, the energy of the universe, the center of it all, than I had felt in years and years. I felt connected. Changed.

CS lewisOver the next few days, I spoke to nearly everyone about having gone to church. I couldn’t get the experience out of my mind. I wasn’t suddenly converting to Christianity or anything, but I was more open to the concept of God than I had been in a very long time. I sat one evening with a dear friend whose Christian faith is central to her life, and I asked her, honestly, if she thought something special happened at church that day. “Do you think I had a special experience? Do you think there’s something different about how I responded to that sermon?” I asked. And what she said was so impactful. She replied with the slightest tears in her eyes, “Yes. I think God had you right where He wanted you. God had a message for you, and He made sure you heard it.” She drew my attention to the fact that I never go to any house of worship and hadn’t been to a church since I was a teenager. She said that church is certainly not always like that, and when it is, we should listen.

Less than a month later, Marty called and said Will had fallen down, something that was truly unprecedented. He had collapsed on the floor of a restaurant, seeming exhausted and unbalanced, and he had narrowed himself down to one food: gluten-free pretzels. The initial blood work came back, showing life-threateningly low potassium levels, among other issues, and the result was that Will needed to be hospitalized. The thing is, that blood work came back Thursday morning, May 22nd. I needed to be in Gainesville, but I was home in Kansas City. It was two days before Julia’s 7th birthday and her birthday party, and my mom, who had only visited for one long weekend in the past year and a half, was on a plane, en route from California.

And then I realized, a bad thing was happening, something I would truly hope is well outside of God’s plan. Will had exercised his free will in starving himself, and yet I had everything I needed in order to handle the emergency. My mom, who is so rarely with us, was literally an hour away and planning to be with us for several days. She could care for Julia and manage the birthday party and give Julia all the special love and attention she deserved while I went to tend to Will. Once my mom arrived, she told me she could stay longer than planned if need be, and off I went to Florida.

I flew out Thursday night, leaving KC on time, breezing through Charlotte, NC, landing easily in Orlando, and hitting no traffic or issues as I rented a car and drove up to Gainesville. Later, Rob told me that not one hour after I left Kansas City, a horrendous storm rolled in that delayed air traffic for hours. But I missed it.

From the airport, I touched base with my friend, Cathy, at the Center For Autism and Related Disabilities at UF. I knew we would need some help during and after this hospitalization. It turned out that Cathy was already in talks with Shands Children’s Hospital to try to make hospitalizations easier on children with autism and other challenges. There was no autism protocol in place, she explained, and one was sorely needed. She had a meeting set up for mid-June, and she could really use a parent’s perspective on what would help. So from the start, we were able to start paying back all this good karma, serving as a bit of a case study to help make an admission less traumatic on future patients.

Recovery is easier with Angry Birds.

Recovery is easier with Angry Birds.

After a few days in the hospital, it was clear that I was not going home on Tuesday as planned because Will was having surgery to place a g-tube. If I hadn’t started working for Lauren’s Hope, I would have been far more freaked out by this than I was (which was still plenty), because in the past year I had worked with a mom whose company makes real-food blends for tube-fed people. I knew it was manageable and safe. I wasn’t totally blindsided by the very concept. But I do work for Lauren’s Hope, and as a result, I immediately had someone to call for advice about feeding tubes.

My mom rearranged her schedule and stayed in Kansas City long enough to allow Julia to finish the school year, and then she flew Julia to Orlando before heading home to LA. As Julia and I had already planned to be in Gainesville just a couple of weeks later, I had already taken Nugget, our new dog, over to a friend’s house a couple of times to get acclimated and meet her dog, so she could watch Nugget during our planned trip. That friend took Nugget from my mom, so he was cared for. And as I had already planned to be working remotely from Florida while Marty was supposed to be on his annual Bonnaroo excursion, I had plenty of projects to tackle that didn’t require me to be in the office.

Everything came together, even in this massive crisis. My mom was there. Work was handled. The dog even had somewhere to go. On the Gainesville side, my friends came out in high style, watching Julia and Neville (our Gainesville pooch) for days, bringing meals to the hospital round the clock, and running errands we couldn’t leave the hospital to do. And through it all, in the quiet moments while Will slept and I watched him through the nights, in the scary moments of procedures and waiting, I felt very certain that we were supported, held, and not remotely alone. I was oddly sure that the message I had heard and received at Easter came when it did in preparation for this trial. It was a notion that was both uncomfortable and indescribably comforting. Believing required a leap of faith on my part, but when I allowed for it, a peace flowed through me that I cannot properly describe.

I refuse to sink.

I refuse to sink.

The way things came together went beyond the logistics of running our lives while Marty and I focused on Will, though. If Will’s low potassium had been caught earlier, he wouldn’t have been hospitalized, so he wouldn’t have gotten the g-tube and extensive therapy he’s now been granted. He would be stuck in a cycle of taking oral potassium while continuing to refuse food through months and months of waiting for and undergoing feeding aversion therapy, and even then, he would likely have ended up in the hospital for some other issue related to not eating. If it had been caught any later, literally within a few days, our 9-year-old son would likely have had a heart attack, which could well have killed him. Will got exactly the help he needed, exactly when it would help him the most.

There are coincidences, and then there are times when it seems that something else is so obviously at work that we would be fools to ignore it. In this crisis, my family has been blessed. Blessed with help, with support, with hope, with healing hands of skilled physicians, with opportunities and resources and strength and love.

I still don’t really know what to call this force that’s at work in my life. God or the universe or the Divine… truly whatever that big giant force is that moves things around in this world is meant to be called, it is present in my life and blessing me with abundance and gratitude, gentle guidance, and answers. And it occurs to me that this is nothing new. It’s just that now, I’m listening.




Read Full Post »

Breathe in. Breathe out. Repeat. We've got this.

Breathe in. Breathe out. Repeat. We’ve got this.

So, it’s an interesting thing, being a special-needs parent. Sometimes, it means we get to witness the most inspiring moments, like seeing Will walk down the hospital hall today, determined to get back on his feet, despite the fact that he was clearly still in discomfort. Sometimes, it means we feel like those punching clowns people hit and hit and hit just to see them come back for more. This afternoon, for example, we found out that the formula Will needs to be on will cost $600-$700 a month, and insurance doesn’t cover it because, “You’d be feeding your child if he weren’t on formula.” Right. That makes perfect sense…if you don’t really stop and think about it. At all. Yeah. You can bet we’ll bounce back to that conversation.

In tough times like these, I try to remind myself of a David Allen quote (and I honestly have no idea who this dude is beyond the person who said this one thing one time that I really like*), “You can do anything, but not everything.” Damn right. This little marble of brilliance has gotten me through some really challenging moments. I have a tendency, as do so many people, to try to do everything and be everywhere for everyone, every day. And of course, this is an exercise in futility because it’s literally not possible in any way, shape, or form. Marty does it, too. Maybe it’s inherent to special-needs parents after a while. I don’t really know. Anyway, when Marty’s in full-speed mode, he’s fond of quoting Warren Zevon, who sang, “I’ll sleep when I’m dead.” What can I say? We’re different…and we’re alike.

Anyway, these are the rambling thought nuggets pinging around in my overloaded brain at the moment as I listen to a storm roll in while Will is taking his first bolus tube feed, watching Finding Nemo, and playing with two iPods simultaneously, including playing the Avett Brothers repeatedly. Talk about trying to do everything. He’s a pro.

Go, Will!!

Go, Will!!

He’s also a pro at school. I’m proud to say that Will’s teacher, who is such an incredible woman, came to visit this evening and brought Will some surprises, including cards from his buddies at school and….drumroll please….Will’s very first Littlewood Leader award! This is a, “Citizen of the Month” type of award that Will has never received in his five years at Littlewood. What a great surprise with fantastic timing! We were certainly due for some happy news after the tough day we had.

It started out ok. Will got to sleep through the night, as they were finally able to hold off on all the vitals checks. The nurse came in periodically to add formula to Will’s bag (it’s kind of an IV setup that runs through a feeding pump), and she pushed Motrin through the tube, all without waking Will. So that was great. First thing in the morning, we had a blood draw, which is much much much much much less horrible now that he has this PICC line so there are no needles involved. Did I mention it’s better? Seriously. Better.

Then it really started. Before Marty even arrived for the morning, and the man was here by 8:30, we were in a bit of a crisis. I had met with the doctor for our morning goal-setting and review. We had drawn labs, as I mentioned, and I had even found a moment to brush my teeth. But then the nurse rushed in with blood-drawing gear, telling me she needed to re-draw the morning’s labs. Will’s potassium came back at 6.3. That’s high. High is bad. If 3 is the low end of normal, and 5 is the high end of normal, that told my non-medical-person-brain that a 6.3 was as high-bad as a 2 or so is low-bad. Plus, she had that very determined nurse face on that lets you know in no uncertain terms, We have to deal with this right now. 

Even better <sarcasm, really big sarcasm> was that we now also needed an EKG to check Will’s heart. That’s not something you want to see someone do to your 9-year-old. Seriously. Their little hearts are supposed to be perfect. So we’ll just say that was pretty much horrible but at least not painful. Around this time, the pediatrician’s office called for an update, so I had to hang up on Marty to fill them in, and then the Occupational Therapist (OT) came to get Will up and walking around the halls.

Then my friend Sharon showed up with coffee. That’s right. I handled that without coffee. No, I don’t know how. Marty had arrived by then, and we were waiting on the lab and EKG results while we ate Panera. It was such an oddly normal thing to do, eating bagels and eggs while waiting on a scary medical test. But that’s what we did. And then the Resident came in and told us Will’s potassium was totally normal. 3something. Completely not high and fine. Five minutes after the EKG I will probably get billed $1k for, but whatever. I’m trying really, really hard not to think about what 9 days in the hospital costs.

Chillin' with a big Will smile!

Chillin’ with a big Will smile, Blankie, and our tubie bear, Brooks, off to the right

The Resident explained that potassium is very temperamental, and if blood isn’t tested quickly in the lab, it can do some sort of hoobadoo and get all funkified and then the potassium looks higher than it actually is and then you have a little heart attack thinking your kid has high potassium and ohmygosh now we’re going to be here another week and why do we need an EKG right this second is he going to die? He didn’t say all that last part. And I’m pretty sure he didn’t say, “hoobadoo,” but I honestly stopped processing information after he said Will was fine. Fuck you, potassium.

Also on the good news front, the throat biopsy taken during the upper endoscopy portion of Will’s surgery on Tuesday came back negative, which in doctor language means good, which sums up everything I need to know about medicine: it’s just some kind of Bizzaro World. But I digress. We also found out Will doesn’t have Cushing’s Syndrome, which I swear they scared the living daylights out of us with yesterday because some hormone levels were wonky and they really, really could have just run the tests without telling us Will might have a massively scary disease that probably wouldn’t kill him, but in my head already had. (And of course, yes, in reality I want to know everything that’s going on, but that was really stressful.) Also, when Marty and I used to watch, “House,” it was ALWAYS Cushing’s when there was no other answer. And Cushing’s looked BAD.

So in the midst of all this craziness, we had an OT evaluation and got a PT (physical therapy) referral due to Will’s depleted state. I’m sure her report sounded way more official than that, but basically, he’s lost a lot of muscle and needs strengthening. He’s walking like a hunched old man or a woman who just had a c-section, yet still trying to run, while walking on his heels and favoring his left side where the button (tube site) is, and he has lost weight. Today, after two days of continuous tube feeding, my 9-year-old weighed in at 22kg. For you normal people, that’s 48.5 pounds. Yes, I had to look it up after they weighed him to figure out the pounds. He’s below the 3rd percentile for height and weight. For comparison’s sake, the average boy Will’s age weighs over 61 pounds. Losing five pounds makes a huge difference when it’s 10% of your body weight.

What else …  PT came by and made Will walk around some more; the pediatrics team came to do rounds and present to the Attending, who discussed medication changes and dosing and all that. Our wonderful, awesome, spectacular Tube Feeding Fairy came by too. Twice. And you know, I’m sure she has a boring title, but it’s late and I don’t feel like looking it up. She’s the nurse who teaches people how to manage g-tubes and tracheotomies and things like that at home. And she’s rad. She was followed up much later in the day by the DME people (that’s durable medical equipment for those of you lucky enough not to be familiar) who brought us our very own feeding pump and a mini IV stand to take home. Just what I always wanted. On the plus side, we have all our gear to go home with, so that’s a good start.

Somewhere in the middle of all of this Cathy Zenko from the Center for Autism and Related Disabilities (CARD) came back around for a long visit. She stayed long enough to get to meet everyone who has asked me how to improve the floor for kids on the spectrum, and she went off to do her own super fabulousness with them. She was already looking into this issue when Will was admitted, so now they have a bit of a case study to work from. We sat and I rambled on for ages about what does and doesn’t work from my layman’s perspective, and so, hopefully, in some small way, we are paying forward some of the kindness and grace that is coming our way. Our experiences may ultimately lead to improvements here at Shands Children’s Hospital that will help make this type of admission easier for kids with autism. It seems there is always a chance to pay it forward if you look for it.

Every. Single. Day.

Every. Single. Day.

It also seems there’s always something to be grateful for. Today, I’m grateful that Will is making gains. He showered today and walked the hall three times. He laughed. He smiled. He got to see Julia briefly when she arrived into town. He achieved his feeding goals for the day. He pooped some more. Hey, it’s a big deal. They don’t let you go home if you’re not pooping. Yay for poop.

I’m also so grateful for all of the loving support our friends and family are providing. I am comforted in the knowledge that people are lifting our family up in prayer all over the world. I’ll be honest. I go back and forth on religion and all that goes with it. But recently, I felt like G-d reappeared in my life. Or maybe I just started paying attention. Whatever the case, I am certain that we are not alone in this at any moment. My little beat up family of punching clowns won’t stay down for long. We’ll pop back up quickly. We’ve got this.


*Ok, also, it turns out David Allen is a dude who makes a living telling other people how to tell other people what to do in his branded $600 a day seminars while he’s in Ojai with his fourth wife. Not that I’m judging…But isn’t that trying to do anything AND everything? Now I’m confused. I need a new quote.



Read Full Post »

I wish.

I’ve always been pretty organized. I’m just one of those, “A place for everything and everything in its place,” people. I like clear plastic storage containers and laminating label makers. I like hanging folders, color-coded files, and multi-sheet shredders. I like alphabetical bookshelves, DVD racks, and CD stacks. I like drawer organizers, shoe racks, and closets divided up by item type and sleeve length. I like knowing where the juice is in the fridge without looking and always having a spare Sharpie around just in case. I like all of these things. And I miss them.

Having kids changed my perspective on a lot of my organizational minutiae. It made me stop sweating the small stuff in a lot of areas, and it forced me to pick my battles as far as getting the family to comply with my hyper-organizational-ism. So, yes, it’s true that my daughter’s clothes are on pink hangers and my son’s are on blue and that I hang my kids’ clothes in sections: polos, tees, long-sleeved shirts, pants, jeans, shorts, skirts, and “other.” But it’s also true that they both get white freebie hangers from miscellaneous clothing stores and that there are completely weather- and size-inappropriate clothes throughout — and shoved in corners of — both their closets because keeping their wardrobes in check just isn’t a high priority these days.

Yeah, you parents know what I'm talking about.

I see quite a bit of this neurotic attention to detail and simultaneous disregard for perfection in Julia. She’ll insist on opening a drawer in her dresser to tuck in the miniscule amount of fabric from her pink tutu that got caught upon closing the drawer, and she cannot go to bed without putting the night’s book(s) back on the shelf. And yet, she’ll overlook her dolls strewn all over her floor and leave a Lego® minefield in the playroom just waiting to sabotage my bare feet.

I see it in Will, too. Will used to spend hours shredding sheet after sheet of newspaper until he found just the right strip to carry for hours or even days on end until it was soft as silk from constant handling. Or he would bring me a chosen piece of yarn and have me wrap duct tape (actively choosing over masking tape or Scotch® tape) around the end of it until it was just so. But then again, Will couldn’t care less about knocking every item off the bathroom counter onto the floor so he can stand naked on it and watch his iPod in the mirror. His room can be (and he often prefers it to be) strewn with his latest obsession, whether it’s ribbons or yarn or cardboard or newspaper.

Of course, it’s different with Will than it is with me or with Julia. I just like knowing where things are, so I have ways of making that happen and keeping our house running as smoothly as possible. But I can sleep if the jelly is on the juice shelf or there are towels waiting to be folded. Julia certainly likes her drawers neat, but she can leave the house without checking each one for protruding fabric. Will’s fixations, on the other hand, aren’t just quirky habits or personal preferences. Will’s behaviors are actual obsessions and compulsions because Will actually has obsessive-compulsive disorder (OCD). It comes with the autism territory. And it really, really stinks.

This is one of those things about autism that no one really tells you. True, as I learned about autism, I knew Will would have repetitive behaviors. I knew he would most likely lack that social filter that tells us which actions are (and are not) appropriate. But it wasn’t until I read about OCD as part of autism that it really clicked. I understood Will in a different way. I realized that his idiosyncrasies were more than his own peculiar preferences and desires. I saw that it wasn’t simply that he lacked social awareness and hence was free to indulge in his activities without concern for what others thought or a desire to conform. Suddenly, it made more sense to me why Will only eats from plastic spoons. White plastic spoons. And why he has to run in a circle around the driveway before coming in the house. And why he has to come out of his room at bedtime and watch his iPod in the oven’s reflection for a minute before going back to bed. This is OCD. These aren’t just “behaviors” he chooses to stubbornly engage in because he likes them and doesn’t care what we think. These are obsessions. These are compulsions. He doesn’t just want to do these things. He has to.

It’s an overwhelming thing, knowing your 6-(almost 7)-year-old has OCD. And severe autism. And of course then there’s the sensory integration dysfunction, cellular metabolism disorders, food sensitivities, and chronic digestive ailments. It’s quite a lot for a grown adult to handle, let alone a non-verbal child who doesn’t write or use sign language. I suppose it’s a bit ironic that, for someone who craves the order and calm of having each box and file labeled, having these diagnostic labels for my son was initially petrifying. Putting a name on any or all of Will’s traits and challenges made each more real. But now I see that the more I’m able to identify, name, and, yes, label, each of the individual issues that come together to form Will’s autism, the better I can understand him, and hence the better I can help, parent, and guide him.

Of course, it was also an overwhelming thing, 5 years ago this week, when Will was diagnosed with autism. It felt a lot like finding out someone I love had died: That paralyzing pain when his diagnosis was confirmed; the conflicting sensations of drowning in numbness while being assaulted by the migraine-painful assaults of every sight and sound; the denial and bargaining and grief. I remember that day. That hour. That minute. That very second. A sparkling crystal bottle of purple light slipped from the gilded shelf of my soul and shattered into stabbing shards for my heart to absorb while the light, with nothing left to contain it, slipped from my core into nothing.

In the Jewish tradition, we mark the anniversaries of the passings of those closest to us through rituals of prayer (Kaddish) and candlelight called Yartzeit. And so, every year on January 23rd,  I remember that day in 2007. It’s a bit like a Yartzeit for that shattered piece of my soul, for those dreams I held for Will, for the expectations I had of my little family’s future. I mourn my old life and the life I had planned. I mourn the days of being able to make sense of everything, of being able to create order out of any chaos with little more than a label maker and a scrub brush. I mourn the days of thinking it remotely mattered which shelf the juice was on or whether each light switch was labeled. I give myself that day to mourn and remember, and then I let go, remind myself to live each day with gratitude, and move on.

Read Full Post »

My recent post about lying via omission to maintain the social contract and my sanity has me thinking about all the ways I have to be less honest than I’d like, specifically when it’s for the benefit of my children, who, ironically, I do want to raise to be honest people. This week, it took the form of spending two hours at the local county health department claiming a religious exemption for their vaccinations, despite being an atheist.

Of course, being an atheist (while still being Jew-“ish”) is a form of religious belief. After all, freedom of religion includes freedom from religion, and religion is really a form of organized philosophy. And philosophically, I completely and fundamentally disagree with the government telling me what to do with my body, and, as an extension, my children’s bodies. So, I suppose, an atheist claiming a religious objection to (or exemption from) something isn’t quite as ironic as it sounds at first, but then again I may simply be justifying my actions, something I often fight the impulse to do despite how much I tell myself I really don’t care what other people think.

So last Thursday, I got “the call” from our elementary school: your kids aren’t up to date on their vaccines, and we need a county religious exemption form for them to stay in school. Ok. So, off to the county health department I went. This building, well-maintained and clean as it may be, makes my skin crawl because it’s full of sick people, and I feel like I’m going to catch dysentery in the parking lot and Ebola in the waiting room. Don’t get me wrong. I’m really, really glad the building is there and that its offices are able to provide all sorts of social and medical services to our community. The Department of Health fills a very important role in our society, and I’m grateful they’re around. It’s just that, if most people’s immune systems are Honda CR-Vs, mine’s a wheelbarrow. So, walking into a building where there are definitely a lot of germy people is not my idea of a fun or intelligent way to spend my afternoon. (more…)

Read Full Post »

This week, I began guest blogging for Momnificent!, an outstanding site and business run by Family Success Specialist and Life Coach, Lori Radun. I’ll be posting about life as a special-needs parent on Lori’s blog once a month for now, and I’ll share links here.

Here’s an excerpt of this week’s post. Follow the link at the end to read the rest at Momnificent.com!

I Am Alice

When my son Will, my baby, my first-born, was diagnosed with autism at 22 months, I felt as if the ground had opened up and swallowed us whole. I felt we’d been shoved, head first, into this bottomless abyss and were in a slow-motion free fall that might never end. And then, on the other hand, I wasn’t sure I wanted it to end, wasn’t sure I wanted to know where rock bottom actually was, because surely this moment, this panic, this grief had to be rock bottom. Surely it couldn’t be worse. But in the days and weeks that followed, I found that it could be worse, and still we were in a free fall.

In those first months, pregnant with my daughter and reeling from Will’s diagnosis, floating from doctor’s offices to therapy centers to support groups, I watched the world move around me like Alice flying downward through the rabbit hole. How did we get here? Where IS here? How did I not know this whole alternate existence was right beneath my feet? When and how will we go home? Only Alice wasn’t 8 months pregnant with a two-year-old on her hip and she careened downward to Wonderland. And there was no chance I was going to suddenly wake up.

Eventually, and I really couldn’t tell you how long it took, I stopped falling. I started to find level ground. I gained my footing in this strange new landscape that had suddenly become my life. I realized I wasn’t actually in an abyss, hadn’t fallen down the rabbit hole, and actually could wake up from this nightmare to some degree. True, I couldn’t change the fact that Will has autism, but I could change one thing: how I responded to the situation.


Read Full Post »

Not long after my son Will was diagnosed with autism just shy of his second birthday, someone sent me this little bit of prose called “Welcome to Holland.” It basically equates having a special-needs child to having your travel plans messed up. Go ahead and read it. I’ll wait.

(Insert favorite muzak here.)

Done? Ok. So, when I first read “Welcome to Holland,” our whole household was in crisis. About to have Baby #2 (aka: Julia), we were grasping at straws, looking for any kind of comfort or hope or promise that there was some light at the end of this tunnel. No, not even that. I was just looking for someone to tell me we were truly in a tunnel and not, as I feared, in an inescapable abyss. In that desperate state, “Welcome to Holland” seemed like a really nice little anecdote. I thought it had been written by a parent of a child with autism (I was wrong), and I took her words to mean that things do get better with time and acceptance (I was right).

So, time passed, and my feelings on this changed. And by “time,” I mean about three weeks. And by “changed,” I mean that when I reread the Holland story, I thought something along the lines of, “Screw Holland. This story is a complete load of minimalizing crap.” From then on, whenever anybody started recommending I read this very lovely bit of Pollyanna-style, all-things-happen-for-a-reason, the-world-is-made-of-marshmallows, illogical bullshit, I simply declined. Pressed for my opinion on the essay, I said it reminded me of a religious answer to a scientific question: it sounds really nice and makes sense…if you don’t really think about it too hard.


Read Full Post »

Older Posts »