The Case For Nudity

The Case For Nudity

Most people know we do a special feeding program for our son, where we puree or chop food and serve it to him through a series of prompts and spoons that can only be ordered on Amazon.

But while all the pureeing and the Amazon Priming and the meticulous measuring of chicken nuggets can be frustrating and difficult, the hardest part of this whole process is something else entirely. It has nothing to do with the food or the feeding protocol. It has to do with my face.

A big part of this feeding program is the way we are – and aren’t – allowed to respond to Josh during a meal. We are to give positive reinforcement and to ignore all negative behavior (unless he is going to hurt himself or someone else). So when he, gee, I don’t know, flings a spoon full of blueberries at my face, I can say nothing. I can do nothing. I can’t glare at him or use my Angry Eyes. I can only sit there, blueberries drying in my eyelashes, while my little fruit flinger laughs hysterically. And then I get to tell him good job for not throwing blueberries the next time.

But the thing about Josh is that, above almost all else, he is very, very observant. It’s hard to sneak things past him, even if you never talk about it in front of him. It took him about 12 minutes into the first session to figure out that I wasn’t going to say anything when he acted like a hooligan.

So what happened next really shouldn’t have come as a surprise.

One fateful day – let’s call it a Wednesday – I was feeding Joshua his bites at the Marcus Autism Center during our initial eight-week run. So he and I were in a room on one side of a two-way mirror, and our feeding therapist and the program coordinator were on the other side. We couldn’t see them, but they could see us. And they got an eyeful.

Josh had been going through what we’ll call a rebellious stage – the aforementioned berry launching, for instance, was one of his new behaviors during feeding therapy. I thought we’d reached the height of his abilities, but I learned a lesson that day that I have learned many times over since – you should never, ever underestimate Joshua.

As I picked up the next spoon to give to Josh, I noticed he was reaching for his shoes. I said nothing as he used his impossibly long reach to remove his shoe. And I said nothing as it went sailing over my head.

A sock soon followed. Then the other shoe and sock. I was irritated that he wasn’t listening and was afraid I’d show it, so I purposely avoided eye contact with him. But out of the corner of my eye, I could he was delighted with himself – and he wasn’t finished.

Ignoring my prompts to eat the next bite, Josh giggled uncontrollably as he began the next phase of stripping: Removing his shirt. He had been able to do that for several months, but he was laughing so hard that it took a minute.

There were, in theory, protocols for things like this. After a few seconds of zero attention being paid to him, he was supposed to acquiesce to my requests and take his bite so he could get his reward. But the joy of nudity was more powerful than any reward I could offer.

I was at a loss. The experts on the other side of the mirror said nothing, I suspect due to laughing uncontrollably. Not that I could blame them – I was now afraid to look at Josh not because I was irritated but because I was fighting the urge to burst into giggles myself.

The shirt was off and had been tossed at my face. I removed it, folded it, and set it next to me. After taking a calming breath and trying to think of something sad, I picked up the spoon for the third time, turned to Joshua, and told him to take his bite.

His only response was to wriggle himself out of the seatbelt in his high chair (ironically, we were participating in this feeding program because he was so small and underweight) and begin removing his pants. Those took a little longer, because he was fighting to take them off inch by inch beneath the seatbelt and tray. But no one ever said Josh was a quitter, and soon the pants joined their brethren in the act of flying through the air like a magnificent, baseball-patterned rocket ship.

We were at a standstill. I could barely breathe from trying to contain my laughter, and Joshua was giggling so hard he couldn’t sit up straight.

Finally, mercifully, our 40 minute feeding session was over. Josh was working on removing the tabs on his diaper, and I was Googling whether you could get a hernia from holding in hysterical laughter for half an hour.

The therapists came in, did not acknowledge the nudity, and told me they would see us at our next session in 50 minutes. They were extremely professional as they handed me Joshua’s socks and shoes. And they maintained their cool demeanor when Josh was finally successful at taking off his diaper.

I re-diapered the giggling maniac, marched him down the hall, and into the private room we’d been assigned for nap time. As I told him to stand still so I could put his shirt on for the second time that day, he smiled at me.

“Mommy?” he said, still smiling.

“Yes?”

“I’m hungry.”

And then I swear he winked.

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The Day(s) My Marriage Ended

The Day(s) My Marriage Ended

I married my husband, Daniel, on a warm spring day in 2011. Actually, since we were married March 19th, it was still technically winter. But a Georgia winter, meaning it was 65 degrees and sunny.

It was a beautiful day. My father-in-law performed the ceremony, and that day still goes down as one of the most fun of my life. We danced to all the wedding cliches, had enough candy to feed a medium-sized village, and even broke out into a flash mob at one point. It was perfect.

And then real life began. Ours, like so many young couples’, began with a joy all newlyweds have: The joy of lying. Not big lies. Not like you forgot to tell them you’re wanted in five states. But little, easy lies, like, “This dinner is delicious!” or “I definitely like this painting.” I used to sneak out of bed in the morning and brush my teeth before Daniel woke up so he would think my morning breath was naturally minty-fresh. You’re welcome for that free tip, humanity. We wanted to make each other happy, so we were willing to overlook towels on the floor or accidentally-destroyed projects (I’m still really sorry, Daniel). We made the extra effort because it was worth it.

We had been married for a year-and-a-half when we found out we were expecting our first baby. We were thrilled! As you probably know, our firstborn arrived a bit less traditionally than the average bear.

And that’s when our marriage ended the first time.

Gone were the days where our biggest worries were over whether to order pizza or go out for dinner instead. I didn’t get enough sleep to even think about waking up early to brush my teeth and sneak back into bed. Towels on the floor became just one more nuisance on a never-ending list I kept tabs on in my head.

Joshua needed our constant attention. After four months in the NICU, he came home to therapies, specialists, oxygen tubes, apnea monitors, and more. As time went on, the needs changed, but the stress of having a special-needs child didn’t.

You want to know one of the truths about having a kid with special needs? It kills your marriage. Kills it. We were both still there, still married, but the marriage we had known was gone forever. In its place was something almost unrecognizable. And it was getting worse every day.

I’ve said before that having a child like Josh changed me. In so many ways, it changed me for the better. It made me more compassionate, and more understanding of the struggles of others, and opened my eyes to an entirely new world.

In some ways, though, the changes weren’t as great. These were the changes that were the hardest to resist. I was so angry at God for allowing Joshua to have so many issues. I was angry at myself for not realizing something was wrong sooner in my pregnancy. I was angry at everyone around me. And while throughout the day, I made an effort to at least smile at other people, by the time I got home from the hospital or new specialist or therapy session, I decided I had given all I could. I couldn’t possibly deal with one more thing. And I took it out on Daniel.

Every forgotten task, every misunderstood conversation, every dish I washed alone – I kept track of it all. I knew how many times I had done the laundry and how many times Daniel hadn’t. Sure, he was working all day, but I was busy with the baby. It wasn’t fair. That’s what I kept repeating to myself. It wasn’t fair. I was a stay-at-home mom, but not by choice. I had never asked for this. I wasn’t even sure I wanted it for a long time. But then it arrived and was so much harder than I expected. And I knew I wasn’t up to the challenge. And not being up to the challenge made me defensive. And being defensive made me resentful. And being resentful made me bitter. And all of that culminated in my marriage slowly dissolving into two bickering parents who didn’t know how to stop arguing.

No one is ever 100% innocent in these kinds of things. But I will be honest and tell you that a lot of this was on me. Daniel tried his best to help me, but I didn’t want his help. And then I got angry at him for not helping me. And then he tried to help me again, and obviously that meant he thought I wasn’t doing a good enough job, and then I was angry again. And then he didn’t help, and how dare he not help me? It was a vicious cycle.

We went on like this for a few years. We had our daughter, Jenna, just 15 months after Josh was born. Daniel worked full-time, and I worked part-time for a while, eventually moving to a full-time position where I worked from home. We had two kids under the age of two, hectic jobs, financial struggles, and so many appointments to go to. Life was busy. Too busy. Jenna was a fussy newborn. Josh didn’t walk until Jenna was almost a year old. There was no rest, no time for our marriage anymore. Even if we had wanted to work on it, there was simply no time.

Same people. Different marriage.

And then one day, Daniel and I had a big argument. (I’m not trying to air our dirty laundry or anything, and I asked Daniel if he was okay with me writing this. Just want to put full disclosure out there.) It was bad. I was so angry and so tired. Josh had started an intense feeding therapy program. Daniel was dealing with some (thankfully resolved!) health issues. It was stressful. And we argued, and then I shouted that I wanted a divorce.

It wasn’t true. I didn’t want a divorce. I was so tired, so angry and bitter, and I just decided to say it, to goad my husband into arguing with me. But he didn’t argue. Instead, we sat in silence for a while. I knew I should apologize. But I wouldn’t. I didn’t.

I thought that I was already so broken that nothing could touch me anymore. But I was wrong. The look on Daniel’s face when I said those words to him made me feel like I had shattered all over again, like the day Josh was born, and all the days after when we heard more bad news. And so I made a choice.

I decided to try to let the little things go.

It was hard at first, and is still a struggle for me, if I’m being perfectly honest. But my goal was to stop looking for ways to blame Daniel, and instead look at the ways he loved me and showed me his love every day. I decided to think about his intent – did he not take the garbage out just to make my day harder? Probably not. Probably he had just come home from a really hard day at work and it slipped his mind while he was helping me with the dishes or feeding the kids. Probably I could just remind him, or even do it myself. And then we wouldn’t have to fight. Things didn’t have to turn into an argument every time one of us made a little mistake.

My other goal was to get to back to reading my Bible every day. That isn’t meant to sound self-righteous; I just knew I needed to hear what God had to say instead of screaming my own words at Him. As we say in this house, it was no longer my turn.

So I started working on my goals. And I’ve messed up so many times. But it’s been getting easier and easier.

And that’s how my marriage ended the second time.

Same people. Different marriage.

Slowly but surely, the arguments grew to be less frequent. We sought ways to work together instead of ways to blame each other for the stresses in our life. Our other situations didn’t change. Josh still had a lot of needs and was a lot of work. We still had two very little kids and very little time for ourselves and our marriage. Those things wouldn’t change. But we could. We did.

When I first decided to write about this, I was hesitant. I didn’t want to paint Daniel in a bad light, because he is a wonderful, godly man, who married a slightly crazy, super short woman. I didn’t want people to judge us. I didn’t want to come across as having so many struggles.

But I don’t think we’re alone in these struggles. Even if you don’t have a kid with special needs, your marriage has likely hit a rough patch. If it hasn’t, please submit yourself for testing at the nearest health facility, because you might be a robot.

And if you do have a kid with special needs, and your marriage is struggling, and you’re not sure how you will possibly make it through one more day of therapy, and leg braces, and helmets, and practicing stairs, and giving choices, and being a constant cheerleader and advocate for your child so they never have to feel different – it’s going to be okay. Things might not change. But you can.

Same people. Three different marriages. And we would never change a day.

D and K

Marcus

Marcus

Hello, adoring fans <–Josh wrote that part. I would never be so vain.

I hope you find yourself well this fine, frickin’ freezing day. Are you well? Text me about it.

As you probably know, Joshua started the Marcus Autism Center’s feeding program this week. A few of you have asked questions about why he goes and what he does there. As always, I live to serve each and every one of you, so here is the Official Marcus Autism Center FAQ By Kristen And Not The Actual Center – OMACFAQBKANTAC for short.

Why do we go? 

Josh struggles with eating in a major way. He’s very underweight and has a hard time gaining any weight. May we all be so lucky, amirite? I kid, I kid; it’s fairly terrible. So this feeding program basically teaches kids how to eat better. Every kid’s experience is different, but the goal for every child who attends is to improve their eating skills in the way they need it most.

What do they do there? 

Josh’s main goal is weight gain, so they are working to increase both the variety and volume of table foods he will eat. Every patient has a schedule – it starts with 40 minutes for breakfast, then a 40 minute break; 40 minutes for snack/oral motor therapy, then another 40 minute break; 40 minutes for lunch, then a long two-hour break; 40 minutes for “dinner,” which is what they call it but it happens at 2:30 for us.

During the 40 minute sessions, Josh tries small bites of each of the four foods they have. They try to incorporate foods he likes alongside foods he resists, i.e., all fruits and vegetables ever. They give him a spoon with a tiny bite of whatever he is eating (it’s diced up into super tiny portions), and they let him feed himself. After he does that, he gets several seconds to chew and swallow, and then several more seconds before the next food is presented. They use a fairly rigid routine and verbal cues to prompt him to eat; in between bites, the therapists get silly with him and will sing songs or play little games at the table. He rotates through each of the types of food several times in one session, and they record how long it takes him, if he chews and swallows it all, if it makes him gag, and a whole bunch of other little squares that they fill in. They must have a huge spreadsheet budget at this place.

When he gets a break, we head to the main playroom. He likes the toys in there and he made a friend today! They also have a playground (we tried that yesterday and instantly froze to death; I’m actually writing this from heaven) and a family lounge where we can eat. He gets his own nap room, and today we spent some time in there so he could have a little rest.

What do you do the whole time, Beautiful and Amazing Kristen? 

Oh, stop. (But go on.) I can observe Josh during his sessions, so I have been watching those. I sit behind a two-way mirror so he can’t see me, but I can see and hear him. During the breaks, I just follow Joshua around until he stops to play. Much like every other day of my life.

Don’t you have a second kid? 

I do! Jenna is being a trooper and will either be with me, my mom, my very sweet neighbor, or a fire station of my choosing. She is allowed to come, but I don’t want her to have to spend all day down there too often, plus she has school twice a week, so we’ve worked out a little schedule for my little girl. The schedule has significantly fewer sparkles than the girl.

How long will this last? 

This is an eight-week program, and we are there Monday – Friday, 8:45 – 3:15. In Atlanta time, this means 7:00-4:00, but the day goes by a little faster since it’s broken up into blocks. I don’t think we run into any holidays during our time there but I’m pretty sure they have therapy basically every day but Christmas.

 

Why does it matter if he eats and/or gains weight? Plenty of kids are small for their age. 

Josh has cerebral palsy, and his muscle tone is all wacky. He needs to gain weight and strength and muscle tone to keep up with the demands his body makes for physical activities. A walk around the block is a much bigger effort for Joshua than the average bear. So he needs to get stronger, and this is the way to help him do that.

Cool? Cool. See my secretary with questions.

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I mustache you a question…but I’m shaving it for later.