How should we then feel?

- from Jeremy

In the end of my last post I said that I would next tackle the question of our feelings regarding circumstances we can't control. I probably should have just kept that to myself. Principally because I'm not really in the detached, scientific frame of mind that one would need to be in to address it. I'm kindof ticked-off and over it at the moment. And by moment, I mean the past couple of weeks.

Signing something about the mob.

I don't always mind the noise level in the house. Jalen is jumping up and down so hard and fast that the doors on the living room entertainment cabinet knock around in their runners. And of course he's yelling at the top of his register while he's jumping. And he's yelling at Elmo or Blue or the Cedarmont Kids on the TV - and they're all way too loud. And Josiah is running from the swing in the play area to the sofa in the living room, jumping in the air and bouncing his tush off the wore-out springs and running back to the swing. Full speed. And alternating yell-laughing with just his usually guttural yelling. It's a genuine, hysterical, air-sucking kid laugh followed by an insistent, baritone howling. Not an unpleasant sound, really. Just loud. And Liv is practicing piano, which I never discourage. And Jack is chasing Judah around, and the two of them are echoing high-pitched cackles at one another. And Christy's got K-LOVE on in the kitchen. Like I said, I don't always mind.

But sometimes I think about mixing some Ambien in the Kool-Aid.

On my mark, share the Cheez-Its.

And I'm not always discouraged by the difficulty level of everyday activities. You know how camping can be an adventure filled with challenges and puzzles of packing and preparation, and then sometimes it's just hassle for hassle's sake? Autism is sort of the same dynamic. There are Sunday mornings where Christy and I are tiger-eyes'd and synchronized, we're tossing little rolled socks down the hallway and doing the fox-goose-grain trick to get the kids in the minivan - it's a coordination of effort that would make Gordon Ramsey proud. We roll up to the church early and sashay into the educational wing like our kids are the Marine Corps Silent Drill Team. Take that, Autism. Then some Sundays Autism sets his alarm clock early and has a cup of coffee. Autism then proceeds to saddle us western style and whip our flanks into the church at fifteen after - half the kids with no shoes on, certain people's hair doing things not fit for civilized society, and a mixture of tears, baby wipe juice and vanilla wafer dust all over everything we're dragging in. Hard to jump right into "His Robes for Mine" after the vibe of mutiny and tactical retaliation that we had in the minivan during the ride in.

But you can't go by me. I'm a domesticated Christian. A spoiled American. A product of western culture, the 40-hour workweek and Super Value Meals. I'm the what-not-to-do. But I do know a little about the other guys. Guys like Louis Zamparini, Lou Verroi in the Frozen Chosin, and Paul the Apostle. Guys that came through some REALLY hard times, and didn't lose their sense of hope or their composure. I know some folks that might trade for my troubles if given the chance. Folks like those at St. Jude Children's Research Hospital, and Nancy and Andrew, and basically anybody in Zimbabwe. The truth is I've got it pretty hard, but I'm pretty soft. There are MANY who have it harder. Way harder.

And here's the thing. I don't look at them and psych myself up to be harder, stronger, better. I look at them and know that the God who is able to bring good out of their situation is the same God I serve. And if He can give comfort to POW's in Japan, and soldiers freezing to death in Korea, and early-church prisoners, then He can comfort me. And if His grace is sufficient for medulloblastoma, and life-threatening heart malformations, and starvation, then His grace is sufficient for Autism. So I'm free to rejoice, and I should rejoice, even if I don't feel like it. Not rejoice despite the circumstance, like finding a happy place or transcending the physical. Not blocking out the circumstance with negative visualization or a stiff upper lip. But rather rejoicing in the circumstance, knowing that it is for my good and God's glory. That's the what-to-do.

Look, I hated algebra. But I got a tutor and got through it and got graduated and never had to do it again. And I hate Autism. But I'm gonna get through it and graduate to Heaven one day. And Josiah and Jalen and I are gonna talk for a long, long time. Quietly. Sitting down. And that's enough comfort and grace and hope for me.

Josiah getting a couple fingernails full of cinnamon roll icing. Precious.

Poo Diggers

- from Christy

There were many factors to consider when starting this blog. I wrestled with whether I could protect and honor our boys and still fully tell our story of Autism. Reality is that Autism is not pretty a lot of the time. In an endeavor to encourage others whose lives are affected by this disorder and to educate our community, we knew the full story needed to be told.

There are reasons behind all of our boy's behaviors. Those reasons are clear at times and not so clear at others. We know that most children with Autism have another disorder that affects just about every aspect of life. It is called Sensory Processing Disorder (SPD). My hope is to share more about SPD in the near future, but, simply put, “it is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within their own body. For those with SPD, sensory information may be sensed and perceived in a way that is different from most other people.” It is most certainly the cause of the nose picking in Jeremy's previous post, and the cause of today's post: Poo Diggers.

Poop. With three in diapers, it is the topic of conversation around our house A LOT of the time. By saying this, you realize that Josiah and Jalen are not potty trained. Depending on the severity of a child's autism, they may or may not potty train on time. I read once that the average time for a child with severe autism to potty train is around 9-10 years of age. However, there are children severely on the spectrum who are never able to master this skill.

Because of their sensory processing disorder, our boys will put their hands into their diapers from time to time. Josiah is very conscience of the fact that he has had a bowel movement. This is really good because it is a sign that he is aware of his bodily functions, and it may mean that being potty trained is in his future. He will try to remove his diaper when this happens, and that makes for quite a cleanup. Jalen, on the other hand, is our very messy boy. He loves dirt, and mud, and anything that looks like dirt and mud. Yep, that means poop. Jalen actually tries to get into his diaper to engage in fecal smearing. Some children fecal smear in an endeavor to get more attention and some do it in an act of anger. With Jalen, it is much simpler than that. He just likes the way it feels and tastes. SPD affects these senses. Thus, it is not uncommon to find the poo smeared all over his face and body, and even in his mouth. I could tell many stories of cleanups that have taken hours. Let's just say that “the trying of your faith works patience,” and our faith has certainly been tried again and again in this area.

That brings me to grace. A dear friend of ours who has a daughter with a severe disability and who can empathize with our struggles, used her talents to bless our family. Lori created outfits for her daughter Amelia that ended up being the perfect fix to our problems. She made Josiah and Jalen several of these outfits that we affectionately call Poo Diggers. Most afternoons and evenings, if you were to visit our home, the boys would be sporting this colorful and oh so practical apparel. Poo Diggers have saved our sanity! God knows just how much we can handle, and He also knows when an extra measure of grace is needed. Lori has been that extra measure of grace to our family.

I hope the content of this post will be taken the way it is intended. Poop is part of the story of Autism for our family and for many other families living with this disorder. It is also one of the tools that God is using to humble us often.

Our House

- from Christy

Jeremy and I bought our first house in Eli Whitney in January of 2003. It was a great first home, and we shared many memories both happy and sad in the years that we lived there. We really never saw ourselves moving. Eli Whitney is about a thirty minute drive from Graham, and, after the boys recieved their diagnosis, it made it very difficult to set up a therapy schedule because of the distance our various therapists would have to drive. We decided to set up their therapies at my parent's house in Graham, but this meant that we spent all day every day at their house. Papa and Meemaw were so gracious to let us invade, but being there all day made it very hard to get anything done at home. It added stress to an already stressful situation.

In 2010, we decided to put our house up for sale. The fact that it sold in about four weeks made us feel certain God was making His will very clear for our family. We decided to rent a house in Graham for a year until we figured out exactly where we needed to be. In 2011, our realtor, who happens to be a dear friend of ours from church, helped us find the perfect home. It was the only house on the market that met our criteria for safety. Josiah and Jalen are both runners. Runner is a term used in the Autism community to refer to a child on the spectrum that has the urge to roam or take off running away from caregivers or away from areas of safety. These children lack the understanding of danger, and, in the case of our boys, they often run to danger.

We needed a home that was only one story (the fewer steps the better), that had a main living area where I could keep an eye on the boys at all times, and that had four bedrooms all located near each other. We also needed a good sized back yard that was fully enclosed with a fence. God opened the door for us to purchase our home quickly. Several volunteers from our church and school helped us clean and paint the house and move all of our belongings. We have been amazed to see how God has provided for us. 

*If you are looking for a fantastic realtor who services Alamance County and the surrounding areas, check out Robin Allred with Coldwell Banker Triad Realtor. She is fantastic!

Eternal Good

- from Christy

 "And we know that all things work together for good to them that love God, to them who are the called according to His purpose.” Romans 8:28 is probably one of the most quoted scriptures in the Bible. It is a promise that God made to Christians, but it is a promise that I believe many Christians misunderstand. God promises that, if we love Him, all things will work together for good, but His promise does not guarantee that we will see the good here on earth. God has a plan for each of our lives. At times, His plan requires us to endure suffering.  That suffering may have to be endured for a lifetime, and we may never know God’s purposes for the pain while we live on this earth. As Christians, we can find comfort in knowing that God’s plan will primarily bring Him glory, and will ultimately be for our eternal good.

Since our boys received their diagnosis of Autism, I have pondered this like never before. Josiah and Jalen have a disorder that will affect them for the rest of their lives. It is a disorder that will also affect our entire family for the rest of our lives. I believe that God is all powerful, and that He can heal our boys. I also believe that God chose our boys and our family to live with this disorder. We experience suffering and pain because of Autism, but that does not mean that we have to live hopeless lives. Our hope is an eternal hope. I think about the day when God will take us to heaven. Our boys will be forever healed, and we will all be singing praises to our Heavenly Father. We will see like never before how good God’s plan truly was. 1Corinthians 13:12, "For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known."

Trick or Treating 2011

- from Christy

Holidays can be hard for children with Autism. They turn their predictable and scheduled lives upside down, and they most often include a bombardment on their senses. Halloween is probably at the top of the list for difficult holidays.

Even though I know it is hard on our boys (Josiah in particular), I still want them included and involved. I want the pictures with them all dressed up, and I want them to want to go trick or treating. I want them to be wowed and amazed and excited like other children. We had never been successful with going trick or treating until this year.

Jeremy and I invited some very close friends of ours over with their two daughters, and we invited Rachel who is the boy’s developmental therapist and her three children. The Mamas took all ten children around the neighborhood. I pulled Josiah and Jalen around in the wagon, and planned for someone else to collect their candy at each house. My assumption was that Josiah would be apprehensive going to strange houses at night, and that Jalen would most likely be indifferent.

To my surprise and joy, this wasn’t the case. Jalen was content to walk with Miss Casey to each door, and Josiah was excited to jump out of the wagon to get candy. We made it all the way down the street and visited around ten houses. I had to high-tail it back home once Josiah decided he was done, but we did it and it was great. The Daddy’s took the older kids back out for more candy gathering, and Casey, Rachel, and myself worked on getting the younger kiddos settled.

I don’t want to live in fear of meltdowns and failed attempts when trying new things with our boys. Trick or Treating 2011 was a success, but, even if it had been disastrous, at least we gave our boys the opportunity to succeed.

Picking Jo's Nose

from left: bead, plastic BB, chocolate chip, ???, popcorn kernel, rubber nubs

- from Jeremy

"You can pick your friends, and you can pick your nose, but you can't pick your friend's nose." That rule doesn't apply around here. In fact, quite the opposite.

A couple weeks ago, Christy was talking to her doctor about Jo - his achievements and challenges - and Dr. A asked whether Jo was putting things up his nose. When she told me about it, we shared a thankful befuddlement. Jo had never stuck anything besides his pointer up his schnoz.

During the following week or so, the younger boys enjoyed some popcorn on the east terrace and broadcast un-popped kernels into every nook and cranny. It was one of those impotent corn seeds that I saw up Jo's nose. It was kind of funny. I squeezed it out with zero difficulty. I texted Christy (who was at a soccer game) to let her know. Later that day as Jo walked by me, I noticed a bulging nostril and got another fresh-squeezed kernel for my effort. Still kindof funny.

But as Jo backed away from me, his head tilted back from the corn-ectomy, I saw a weird glint up his left nose hole. I grabbed him back up and took a better look. Something was up there. Way up there. And it was metal and looked industrial, almost geared. It wasn't funny anymore. My first thought was he had somehow hocked up one of his dental improvements, but I quickly dismissed that idea. One thing was sure, it was lodged and it was causing him some discomfort. I started to wonder how long it had been up there - he'd had a very difficult previous day and night. Could this thing have been bothering him and we didn't know to look for it?

the mystery boogie, with a popcorn kernel to show size

So I found some tweezers and with Herculean effort I held him down and carefully dug it out. He seemed relieved. I was very relieved. Since then he's snootered a chocolate chip, a bead from his sister's jewelry kit, one of his brother's Airsoft pellets, two rubber nubs he bit off a ball and another popcorn kernel for old time's sake. We're working up quite the modern art masterpiece of a nose treasure collection. I shall call it, "Is this gross enough for an NEA grant?"

So what do we do? A doctor friend of ours has recommended that we not use the tweezers on him anymore. There is a danger (even for people that are trained) of puncturing the fragile ethmoid bone that separates the nasal cavity from the brain. If you've ever seen a Chuck Norris movie then you know the dangers associated with this area of the noggin. It occurred to me that we could have Jo wear one of those plastic cones they put on dogs to keep them from licking their . . . wounds. It would work great, and look rather Elizabethan, but it would drive him bonkers. We've been able to curtail the problem some by policing the house more thoroughly for kernel-sized objects. In frustration, a couple days ago, he tried to cram a Fruit Loop and was unsuccessful.

So how 'bout it, Internet? What strategies can you recommend? And what do you reckon that metal thing was? And how should we feel about circumstances we can't control in life. Tell you what, y'all work on the first two, and I'll try and answer that last one from the Bible in my next post.