Christmas 2011

- from Christy

We spent weeks in preparation. The Christmas tree was filled with non-breakable ornaments, the decorations were all arranged just out of reach, and now it was time to purchase presents. Jeremy and I devote a lot of thought to our gift giving. Our children are spoiled just by nature of living in the United States, but we try to give thoughtful gifts without going hog wild. (For anyone non-southern reading this post, "hog-wild" is a term referring to being "so wildly excited as to be irrational or devoid of good judgment.")

Olivia and Jack tend to be very easy to please. Their wish lists are short and include items that they have been interested in for some time. This was really the first Christmas where Judah was aware of the gift giving and celebrating. I'm convinced he would have been thrilled with a lump of coal in his stocking. Jalen is not terribly hard to please either. He is pretty clear about what interests him. Last year he was into dressing up, and so he got a full length mirror and a box of dress up clothes and hats. This year he has been interested in microphones, telephones, cameras, and stethoscopes. This may sound very normal, but Jalen fixates on items and carries them around all day long. That is where the behavior no longer appears normal, and would be considered atypical.

Josiah is another story entirely. Trying to figure out the perfect gift for him is a nightmare. We have the same desires as other parents. We want to be confident that we have found the perfect gift. One that brings him instant excitement and causes his little face to light up with joy. But the truth of the matter is that we rarely feel confident about our purchases, and we most often don't get the joyful response we were hoping for. Every birthday and every Christmas, we try nonetheless.

Jeremy and I were pretty sure that we had nailed it this year. Because Christmas fell on Sunday, we decided to celebrate a day early. We knew that Christmas Eve morning would come, and we would ALL be thrilled and happy and feel special. Christmas Eve morning did come. Josiah did well for the first little bit, and he even seemed to enjoy his first small gift. But, it didn't take long for him to get overwhelmed and disinterested. I tried over and over to draw his attention to the presents I was opening for him. He would sit down long enough to enjoy some candy from his stocking, and then he would go back to swinging in his swing, and staying on the outskirts disengaged and agitated at times. We were not surprised by Josiah's behavior, and we certainly weren't angry. I asked Jeremy if it still bothered him, and he said of course it was still heartbreaking. There are some aspects of this disorder that cause the same pain again and again.

I kept my emotions in check until Papa and Meemaw called to hear about the excitement, and, as always, I welled up just hearing my Mama's voice. She let me have my moment of sadness, and then it was time to buck up. I had four other children running around excited and ready to take on the day. And after the excitement settled a bit and a good nap was had, Josiah warmed up to his presents, and has been enjoying some of them ever sense. Yes, we did a great job of choosing gifts that Josiah would enjoy, but we had to be patient and let him find the joy of the gift on his own timeline.

 Moments like this make us treasure our faith all the more. How thankful we are for an eternal hope, and for the promise that one day all Christians will experience perfect joy together in heaven. We are so grateful for God's gift of His son Jesus, for the sinless life Christ lived, and for His sacrificial death on the cross that provided a means for us to be forgiven and saved. Yes, we have an eternal joy and hope!

Feeling Atypical

- from Christy

The holiday season is upon us. Thanksgiving, Christmas, and New Years bring a flurry of parties and get togethers that keep our calendars booked and our stomachs full. I have always loved getting together with family and friends, and many people who know me well might even label me as outgoing. (Ok, stop the snickering.) Jeremy would be the first to tell you that, in our early years of marriage and parenting, I pleaded for us to "go out" every weekend. I longed for social interaction! In a lot of ways, things haven't changed. I'm still the girl that loves a house full of people and lots of good conversation. But, in some ways, I couldn't be more different.

If I'm being honest, having children who have developed in an atypical fashion has left me feeling quite atypical myself. It's more than just the common complaints of motherhood like feeling out of touch or trying to communicate with burnt brain cells. There is an anxiety for me that comes with being around normal people with their normal children. I know the word "normal" is not politically correct, but it's true none the less. When you're lost in your own world, when you can't talk, when you can't stop moving, you are not normal. You are different. The politically correct word is atypical. And, when you care for someone so atypical, you feel different and not normal. Atypical. Well, at least I do.

I adore my family. They do an awesome job of loving and supporting us, and are always there when we need them. Over the past year, whenever we would plan family get-togethers at my parent's house, I started having a lot of anxiety leading up to the time we would meet. I think more than anything it has to do with seeing so clearly just how different our boys are. I long for Josiah and Jalen to interact with their cousins. I want so much for them to sit around the table and eat with everyone else. With seven cousins and three siblings, we have ten typical children who are growing and developing normally. And when the babies in the family passed Josiah and Jalen in development, it only served to make me more emotionally raw. I really don't want to be the spoil sport, the party pooper, the drag who cries at every function. Right now, my strategy for combatting this is to show up early. If I get there before the party starts, I tend to get the emotion over with. It's not ingenious, but it helps. I am determined not to let this spoil the joy I have in spending time with family.

This is me letting Jeremy know that I was having a hard time.

It has also become increasingly difficult for me to take those all too important breaks from time to time. I'm ok if Jeremy and I go out for a few hours, but, even then, dinner and a movie is about all I can handle before breaking out in a cold sweat. Leaving Josiah is just plain hard. The real anxiety comes when I have to go to functions by myself. Mind you this only happens a few times a year. It's the conversation that often gets to me. Autism is such a huge part of our lives that I find it hard to talk about anything else. I end up feeling awkward and tongue tied. We just had a lovely ladies Christmas dinner at our church last week. I had a lot of fun, but it wasn't without its bumps. I welled up with tears a few times, and sent several texts to Jeremy to check on Josiah. The important thing is that I went. It is therapeutic just going, and I ended up having an enjoyable evening.

This is Jeremy's thoughtful text back. I love him!

If you're a parent of a child with special needs, you may know just where I'm coming from. The amazing thing in all of this is that God is the giver of faith and He also created us to be emotional beings. It is natural to struggle with fear and anxiety at times, but the point is just that. We should struggle. It is when we allow ourselves to become paralyzed by our emotions, that we fail to trust in the giver of faith. We have to remind ourselves again and again that God has a purpose and a plan that we can't begin to fully grasp or understand right now. Feeling atypical is just one of the means of stretching us and molding us into the people and parents He want us to be.

2 Corinthians 12:9, "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'"


   

   

A Message from Meemaw

What a privilege to be asked to contribute to our children’s blog.  I have laughed and cried along with them as I have read each entry.  My message is from the perspective of “Meemaw” and to discuss some ways that Bob (Papa) and I have tried to come-alongside Jeremy, Christy and their children in the midst of what will be a lifelong trial – one filled with many joys but also with many frustrations and things that are just down right hard.

Meemaw and Jo in the snow.

How are grandparents to help?  By all means the worst thing you can do is say, “I’ve raised my kids, now they can raise their own;” or, “I am just too busy to help.” Everyone can do something! Thankfully, we live near our children which affords us the privilege of seeing our children and grandchildren often and allows us the opportunity to be of help to them.  Let me give you some concrete ways that I believe have proven helpful:
 

1. Pray often for your children and grandchildren.  This can be done no matter how far away you live.
2. Don’t be quick to judge!  Bob and I are not living the minute by minute trial that has been entrusted to our children.  Our policy is to offer advice when asked!  
3. Be sensitive when Mom and Dad need a break.  Let that break be what helps them most and not what might be most convenient to you.  We’ve found that Saturday mornings seem to work best and do our best to offer that at least once per month.
4. In the words of my dear mother, “Open your eyes!”  In other words, be observant to ways you can relieve stress  - wash a load of clothes, clean the bathrooms, pick up toys, pick up siblings from school, wash the dishes, clean hand prints off windows (unbelievable sometimes!), provide a timely meal or money for one, etc.  You get the idea.  Those day to day tasks that can seem so overwhelming when you are at the end of you rope both physically and emotionally.  
5. Be a sounding board!  Sometimes Mom and Dad just need to unload, and it may not always be pretty. Let them blow-off without judging.
6. Have a sense of humor!  (I have to admit that can be difficult when a “Poo Digger” was not worn and should have been!)
7. Love those grandchildren!  They are each a precious gift from the Lord whether typically developing or not.  Find ways to spend time with each to show them that they are special to you.
8. Thank the Lord for each grandchild you have!  Each one has been equipped to do God’s will and serve the purposes He has planned for them.
9. Recognize that God in His sovereignty has given these precious children to all of the family to display His glory and for our eternal good.  Pray that the Lord will further His Kingdom through these special children.
10. Hold fast to each moment you have.  None of us is promised tomorrow.  Treasure the time the Lord gives you with your children and grandchildren.

These thoughts have been somewhat random and certainly not exhaustive.  Hopefully, they have provided some ideas to those of you who may be grandparents of special needs children to begin thinking of ways to encourage your children and grandchildren.  How we praise the Lord for each grandchild He has graciously given to us!

Meemaw with Jay back when you could hold him still.

Papa and Meemaw

- from Christy

I have vivid memories of my Grandparents coming to visit our family when I was growing up. There was always great anticipation for their arrival, and I remember that very often there was a "to do" list that they insisted be ready for them to complete during their stay. My grandparents were hard workers, and their language of love was giving and working around our house to ease the burden of chores and time-consuming projects that my parents would otherwise have to complete. Don't get me wrong, we had a lot of fun during their visits too, but they always left us in better shape than they had found us in. It was a blessing to my parents and a lesson for us kids.

Scroll forward several years. My grandparents are all with Jesus now, my parents are now the grandparents, and I am the grown child who is now being blessed. My Dad and Mama have always gone above and beyond to help their children out. They're always available and always willing to go without, to change their plans, to arrange their lives all for the purpose of loving their children and grandchildren more and better. I am convinced that no one works harder at this than Bob and Jane LaTour.

Dad and Mama have been there for every birth and every trial and every moment in between. In God's perfect sovereignty, Jeremy and I are now in a place of even greater dependency on my parents. Josiah's needs are so tremendous that we are really only able to leave him in their care whenever we need to be gone for any significant length of time. The boys' needs make keeping up with things around the house challenging to say the least. My parents are ALWAYS helping out with laundry or cleaning or yard work. You name it, they do it. But they don't just provide for our physical needs. Jeremy and I turn to them during those very emotional times too. Mama calls every day to get the run down on how we are holding up. They understand like no one else how hard this all is at times, and how much of an emotional roller coaster we are on. They do a great job of not judging us during our weakest moments while still encouraging us to focus on God's perfect wisdom and plan for our lives.

I often become concerned about being too needy, concerned about monopolizing my parent's time, concerned about burning them out, and concerned about how we will make it in years to come if something ever happens to them. Bottom line, we didn't choose Autism - it's part of God's plan. I have longed from time to time to just have a moment of "normalcy," a moment where we weren't so needy, a moment where we could just go and be like everybody else. But that is just not what God has planned, and I know that we are safest, and best, and happiest, and most joyous when we are smack-dab in the middle of HIS plan. How thankful Jeremy and I are for my parents, and for the fact that God is using them to help in practical ways and using them to help sustain our hope in His eternal purposes. We love you Dad and Mama, and can't thank you enough for all you do!    

Impulsivity

- from Christy

Impulsivity (or impulsiveness) is the inclination of an individual to initiate behavior without adequate forethought as to the consequences of their actions, acting on the spur of the moment.

Thank you Wikipedia for that definition. While technically accurate, it fails to truly comprehend the destructive nature of this behavior when it comes to Josiah. A more exacting definition of impulsivity in Josiah would be the need to touch everything and everyone, often times destroying or injuring said thing or person. Do we tell him no? Constantly. But the reality is that he does not understand or he does not remember that the behavior is inappropriate most of the time. Don't get me wrong, I'm sure there are times when he is being an absolute stinker, but it is impossible to discern when it is one of those times. Whether it's dumping the contents of the refrigerator all over the tile, violently clearing everything off the counter tops, tossing his cup of drink after every third sip, grabbing at food and slinging it everywhere, pouring the volume of dirty dishes from the sink, pulling people's hair, licking people's faces, sticking his finger in people's nose or mouth, the impulsivity is constant and relentless. In the case of this morning about 5:00am, he stepped on Mama's net-book screen and crushed it. In the past minute, he dumped a glass-full of dish water from the sink, pulled Judah's hair, knocked my glider rocker over, and snatched part of Judah's toy sending him off the deep end. And he is now standing in front of me naked. Time for a Poo Digger.

Josiah's need to perform self-stimulatory behaviors only magnify his constant motion and impulsive urges. In the Autism community, this is referred to as stimming. Stimming is "a repetitive body movement, such as hand flapping, that is hypothesized to stimulate one or more senses." In the video below, you see Josiah engaging in one of his favorite stimming behaviors. Needless the say, the arms of my couch do not accumulate dust. Don't you think pioneer women would have loved to have Josiah around during the pre-vacuum era when dust and dirt had to be beaten out?
                   
Dr. M., our developmental pediatrician, explained to us that the neurotransmitters in Josiah's brain are not firing properly. The neurotransmitters that cause you excitement or fear, fire in Josiah's brain on a second to second basis. This is the cause of his constant need to move, and his inability to gather himself and focus. Jeremy and I don't know how this makes Josiah feel, but we can only imagine that it is exhausting for him to always be "on."

 

You can hear Judah in the background talking about Josiah.

The decor in our living room consists of a crib mattress, slide, trampoline, and swing hung form the rafters. We have bins full of toys that are suppose to give Josiah input to calm his senses. The hope is that he will use this equipment to get his energy out in appropriate ways.

The crazy thing is that he does all of this with a cherubic smile and innocent shine in his eyes. There's sheer joy and excitement in his movement most of the time and, occasionally, a little deviousness too.

Are our reactions always holy? Far from it. But we do have moments when perspective is our strength and God allows us to react in love and understanding. Sometimes. Jeremy and I know that my laptop is just a thing and our stinker meant no harm. The Risperidone that Josiah is taking is supposed to help regulate his agitation, irritability, and impulsivity. We are thankful for two out of three today, and pray that in time Josiah's impulsivity will calm.

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.

“Salvation is of the Lord”

Here's a special guest post from the boy's Papa, Bob La Tour.

Bob's spiritual leadership to the family was especially meaningful after Josiah's diagnosis when we were grappling with the question of salvation and Autism. The Bible says that to be saved from Hell one must confess with his mouth the authority and sacrifice of Jesus, but what if you can't speak? Our theological instinct was to view Josiah (and later Jalen) through the same Scriptural lens as newborns that die and find grace despite their inability. Bob, in his poem (which is below and which hangs on our wall at home), points to the even greater truth of God's complete sovereignty in every persons deliverance from Hell. The bottom line is that we ought not think a person has an advantage in coming to Christ because of their own ability, and likewise we ought not consider a person spiritually disadvantaged because of their disability. Bob's post follows:

Any condition that hinders their loved one’s ability to comprehend information naturally heightens Christian grandparents’ concern that their grandchild with special needs might not understand the gospel and flee to Christ. Most evangelical Christians embrace the clear teaching that salvation is by grace alone through faith alone in Christ alone for the glory of God alone. We mouth those words, often without meditating upon the reality of how pervasive the grace of God is in the salvation of any person, no matter how “normal” he or she may be? A careful and prayerful reading of Ephesians 1 and 2; I Corinthians 1:18-25 and 2:1-16 reveals a desperate dependency upon the Holy Spirit to make alive those who are “dead in trespass and in sin” and to grant unto them “repentance toward God and faith toward our Lord Jesus Christ” (Acts 11:18; 20:21).  It is out of our firm conviction that salvation is of the Lord whose grace is both compassionate and comprehensive that my wife and I pray that God will bring all of our grandchildren to Christ. While sharing the gospel with them through our lips, and we trust by our lives, we ask for God’s amazing grace and mercy to grant unto them repentant faith for His glory.

 
“Salvation is of the Lord”

There is no fortress of the mind,
No dungeon of the heart so black,
That light and life can be repelled,
The call of Truth e’er be brushed back.
Nor is there rebel bulwark made
Where Sovereign grace cannot invade--
No ‘heartland’ distant, cold and dark
Where Love’s sure Word cannot persuade
The arrogant or ignorant
Who will not, or who cannot see
Their desp’rate need of saving grace
That beckons them to bow the knee.

A soldier of the hosts of light,
Mine is the herald’s humble role.   
Christ leads me to engage the hosts
Of darkness that enslave the soul.
I must not fail to press the fight,
Full knowing it is God’s to win.
No matter that I doubt myself--
To doubt my God is grievous sin!
“All souls are mine!” Jehovah cries,
And draws my focus to His pow’r
That reassures my fainting heart
Amidst doubt’s dark, oppressive hour.

Though oft’ rebuffed, I persevere,
And bravely lift God’s two-edged Sword.
N’er trusting in my own resolve,
I gain new hope through Christ the Lord.
God hears the often wordless prayers
That from my burdened heart ascend
As love compels me to press on,
And plead for grace time and again.
Strengthen my faith, Almighty God,
As I recall that saving grace
Quickened my own dead heart to life,
And drew me to Thy resting place.
                   

Bob LaTour

Jalen Speaks

- from Christy

Dateline Graham - Late September

The boys had sat through hours and hours of speech therapy, and still there was no speech. I had resigned myself to this non-verbal state. After all, the neurologist told us that if Josiah and Jalen were not talking by the age of three, then they would likely never talk. Josiah was now five years old, and Jalen three and a half. Josiah had no language – not a word. Jalen would occasionally say an approximation of “mama,” but it was very infrequent and rarely upon request. Our friends at TEACCH encouraged us to hold out hope, that there is so much unknown about this disorder. Our focus changed. Yes, we would continue speech therapy, but we resolved that, if God wanted the boys to talk, they would. If He didn’t, then they wouldn’t. We chose to focus on resting in God’s sovereignty.

Towards the end of September, Jalen began what seemed like babbling. He always made noises, but the sounds he now made were almost like a conversation. He began to cue in like never before, taking interest in the facial expressions of others. He also started saying the letter “d” when we would recite the alphabet to him, and he would repeat most of the word “eat” when we would say that it was time to eat. All of this was great, but we remained guarded. We had seen what appeared to be development before, but it went away as soon as it showed up.

On October 10th, I was standing in the kitchen when I heard singing. Olivia and Jack were at school and Judah was playing. I knew instantly that it was Jalen. I turned around and found him in the swing. He was singing, Behold. Behold, I stand at the door and knock. If anyone hear my voice, and will open, open, open the door, I will come in. He sounded like a deaf child – the melody of the song was perfect and some of the words were recognizable. Jalen was singing!

The speech therapists that we work with believe that Jalen has something called Apraxia. It is a disorder that causes problems with oral motor planning. This is why Jalen sounds deaf and is hard to understand. It is something that can improve with therapy. Normally it takes years of therapy to overcome, but it can improve.

In the weeks that have followed, Jalen has added several new songs to his repertoire: B-I-N-G-O, Deep and Wide, Jesus Loves Me, and The Wheels on the Bus. He has started saying the alphabet from A-Z when I use sign language to finger spell it. The sounds are very hard to understand, but given the melody of the songs and the order of the alphabet, there’s no mistaking what he’s trying to do.

What are we learning? That God is “able to do exceedingly abundantly above all that we could ever ask or think” (Eph.3:20), that we can rejoice that God’s mercies are new every morning and He is faithful (Lam. 3:23), and that God knows the plans He has for us (Jer. 29:11). God created Jalen, and placed him in our family. God sustains Jalen’s life, and has given him a voice. We are rejoicing!

A little something from the personal archive

- from Jeremy

A journal entry from June 20, 2011

"What a terrible day. Not that anything terrible happened - just that nothing happened. A day spent working on nothing of significance. An evening spent playing at nothing of significance. And yet I feel as though there is something to say. Not just the normal draw that I feel to a blank page, or a nice pen or this expensive keyboard. More than the typical supposed writer in me trying to get out. More than the stories I’ve wanted to and now promised to tell. More like an unanswered question lingering in the air. An expectation that there is some reasoning, some intellectual or emotional beauty to be drawn out of this common disappointment. Some yearning for a final thought that keeps me sitting here when fatigue and common sense would plead with me to submit to my pillow.

I think part of it is held over from the camping trip. It was tough. Josiah struggling with us and us struggling back. The night’s broken rest, and the morning’s sputtering and wheezing to get started. The dirt and the bugs, and the smelly diapers and humidity. The feeling that everyone is tolerating and no one is exulting. Or maybe that’s just me. Camping in our situation is everything I hate about my life except my job, and nothing I love about my life except my family. I told Christy exactly that as we sat in the sprinkling rain late in the last night of the trip. Rather than have a moment of understanding where I’m coming from, I think she just heard it as negativity. Who can blame her for that?

It's like I’m all out of anger, and now just feel deflated and sad. Joe is only becoming more frustrated with us, and Jay is only becoming more strange and disturbing. Today Jay took his poop from his diaper and rubbed it all over his face. Now, Autistic or not, shouldn’t some things just not be done? Not be appealing? Does everything have to be upside-down and backwards with these kids? Awake during the night. Turning down nearly everything offered from the kitchen and then eating rocks and mud. Never quiet and yet never communicating. Grabbing my hand every other moment in the house and then refusing it in public and running away as fast as they can."

Is it okay to have a terrible day? Is it wrong to reach out into the darkness of the future with a quaking candle of question? Is it just negativity? Or worry? Am I selfish to seek the least degrees of disturbance? Is there a Stoicism that will help me accept the fact of random poop on the bookcase? Am I lazy or spoiled to wish sometimes that it was just a little easier to live in my own house? I want to live a life of blessing and joy and meaning and service. How do I rise above the fray and show my precious babies that they are delights and gifts and special creations of God? Very special creations.