Why does he do that?

- from Christy

*DISCLAIMER: The following post shares some information, videos, and pictures that are graphic in nature. We would never want our posts to be seen as voyeuristic or crass, and it should be understood that, in sharing our boy's story, we want to respect and honor them while educating and encouraging others. This is part of the story of Autism for our family and many others.  

"Why does he do that?" This is one of those questions I hear often, and I wish the answer were simple. MANY children living with Autism have a disorder called Sensory Processing Disorder or Sensory Processing Dysfunction. It is a disorder not recognized by many doctors and not covered by most insurance companies, but, in the case of our boys, it is one of the most debilitating and hardest characteristics of their Autism.

Jalen making another mud creation.

I could give you the textbook definition for SPD, but it will be clearer if I explain it in layman's terms. (NOTE: I am not a doctor. The information I am about to share is what I have found to be true in our boys.) So we all remember learning about our five senses in elementary school, but what you probably weren't taught is that we actually have nine senses.  The senses we were taught are hearing, seeing, smelling, tasting, and touching. The other four senses are as follows: vestibular sense, temperature, proprioceptive sense, and pain.  Body temperature and pain are clear enough, but the other two are probably unfamiliar to many. The vestibular sense "is the sense that allows an organism to sense body movement, direction, and acceleration, and to attain and maintain postural equilibrium and balance." Proprioception has to do with awareness of ones body parts. "Neurologists test this sense by telling patients to close their eyes and touch their own nose with the tip of a finger. Assuming proper proprioceptive function, at no time will the person lose awareness of where the hand actually is, even though it is not being detected by any of the other senses. Proprioception and touch are related in subtle ways, and their impairment results in surprising and deep deficits in perception and action." In a child with SPD (remember a lot of kids with Autism have SPD), their brains cause their senses to work differently than typical people's senses. For example, a person with SPD may have very sensitive hearing. The sound of humming to the typical person, may sound like a fog horn going off to someone with SPD. Likewise, when looking at another person's face, SPD may cause someone to be completely overwhelmed because they see every little nuance or imperfection. I once read that a young girl with Autism said when she looks at someone, her eyes take a thousand pictures of the person's face in just a second. For this reason, she most often avoids eye contact. SPD can also cause the sense of smell to be overly acute. And I don't mean "oh that is a really strong perfume you are wearing" acute. I mean "how can you smell the onions that are all the way on the other side of the store" acute. People with Sensory Processing Disorder often have severe oral aversions. Teeth brushing can feel like torture, and their diets are often narrowed due to sensitivities to food textures and tastes. I know several children who gag just looking at food that appears "wet" in consistency. Imagine if your skin detected every little fiber in the clothing you wear. Most of us don't worry about being aware of the tag on our shirt all day. People with SPD have described their clothing making them feel like thousands of bugs are crawling all over their bodies. Vestibular and proprioceptive movement can be significantly impaired causing a lack of body awareness and difficulty in maintaining balance which can cause clumsiness. All of the above are just a few examples of hypersensitivities when it comes to SPD.

Josiah climbing high.

BUT... just to make matters more complicated, SPD can also cause hypo-sensitivities.   A person with SPD may seek out loud noises, or they may miss details that they were suppose to see and that would be obvious to the typical onlooker. SPD can cause a dulled sense of smell and taste. Things that should smell and taste putrid, may be pleasing to a person with this disorder. Some people with Sensory Processing Disorder don't feel pain as severely as typical people or they may be very sensitive to temperature changes. As I mentioned before, SPD can also affect how people process their body moving in space. Imagine how this could make you feel riding a bike or even riding in a car. These are just a VERY few examples. The list is endless, and, in many children and adults with SPD, they struggle with both hyper and hypo sensitivities. That's right, SPD can manifest itself in some really odd combinations. Let me compare our boys to give you an example of how SPD affects kids differently.

JOSIAH:

Josiah constantly trying to block out noise.

• His sense of hearing is very sensitive. He covers his ears a lot of the time in order to block out all the background noise his hearing picks up. Josiah often looks like he is in pain from his surroundings being too overwhelming.
• Because Josiah is non-verbal, we can't know for sure how his senses process things, but I do believe his sense of seeing is probably hyper acute. He often squints or closes his eyes.
• Josiah has an extremely narrowed diet. Since the senses of smelling and tasting are linked, I believe both are affected by Josiah's SPD. He tends to eat mostly crunchy snack foods or things that are dry and sweet. He only eats a couple of fruits, and he completely rejects all vegetables and meats. 
• Josiah's sense of touch is hyposensitive. He doesn't respond to pain as dramatically as typical children, and he seeks out very rough interactions with others. He likes his back to be pounded, his legs to be squeezed, his arms to be tickled, and he loves for his body to move in space. He loves to swing and spin, and he often requests to ride in the stroller or car when upset. 

Josiah loves the water, and both the boys eat the bubbles and lick the bar of soap.

 JALEN:

•  Jalen is starting to speak more and more, but he mostly just names things right now. His communication deficits make it difficult to know what he is hearing and seeing. If anything, we believe Jalen hears and sees details in the world around us that most typical people do not. He doesn't seem overwhelmed very often by this, but it certainly causes him to be distracted. Often it is almost impossible to get his attention. He is in his own world checking out all the details we can't pick up on. 
• Both of the boys have PICA, but Jalen's is VERY severe. His senses of smell and taste are like nothing I have ever seen. He eats everything outside, and I mean everything. Dirt, gravel, mud, stagnant water, mulch, wild onions and various weeds, flowers, and, if he could get to it, animal waste. This kid is a mess, but SPD is largely to blame. 



Jalen HAS to get into dirt.

• Jalen's sense of touch seems hyposensitive. He likes being ticked all over and he loves to be squeezed. SPD has affected Jalen's ability to predict how his body is moving in space in certain ways. He often gets terrified for someone else to control his body movements such as picking him up, twirling around with him in their arms, or lifting him in the air. But, as long as he can control his body, he is a daredevil. He loves climbing up high, and swinging, and jumping, and one of his favorite activities is balancing while walking across the half wall surrounding our carport. His calculated climbing reminds us of a cat.

Jalen using the Nestle Quick to make mud.

The question many people have is how do you treat SPD. There really isn't a cure for Sensory Processing Disorder. The treatment is consistent therapy to desensitize the senses most greatly affected. The therapy can seem odd to many people. In order to get proper output, you have to provide proper input. If a child has oral aversions, you can stimulate the mouth by rubbing the gums or getting the child to eat pop rocks, just for one example. A surgical brush (used by doctors when scrubbing their hands before surgery) is used to stimulate the skin all over the body to help with organizing the nervous system and to help with skin sensitivities. To help children with vestibular and proprioceptive issues, therapists swing them in all different types of swings. They spin them and create obstacle courses that help with body awareness. There are also feeding therapies to help broaden children's diets. Our living room has a trampoline, slide, tents, tunnels, and even a swing hung from the rafters. All of these are tools we use to provide proper input to help calm Jalen and especially Josiah during times of sensory overload.   

More ear covering.

WOW! If you made it to the end of this post, you are a trooper, and I thank you. The number one cause of meltdowns in Josiah, is sensory over-stimulation. Can you imagine what it must be like when multiple senses are functioning wrong and being bombarded all at once? One of the greatest disruptions to peaceful living round these parts is Sensory Processing Disorder. For all the parents reading this whose child's Autism is greatly complicated by SPD, we can empathize completely! Our faith is being tried, and our patience is ever growing.

*All quotes taken from Wikipedia.

The following are several videos of our boys, and some of the "joys" we experience due to SPD. Once again, watch them at your own discretion. One of the videos involves a bit of poo. 

Jalen loves the mud. His SPD causes him to be  drawn to textures that are messy. He often pulverizes his food into a mash, licking it to make it really slimy. After watching the video, you may be concerned that Jalen is wearing a girls bathing suit. He loves the silky texture of Olivia's bathing suit, and, to avoid him taking all of her suits, we have given him the blue one to wear at home. For Jalen it's all about how it feels, and not whether it is gender appropriate.

We were at the park with the kids in this video. Josiah is not only seeking input from swinging, but he is also licking the sand. His PICA is not as severe as Jalen's but he eats his fair share of sand, rocks, and dirt. 

Josiah loves swinging in his swing. It provides him with vestibular input, and we often use the swing to calm him during meltdowns and to help us when getting him to sleep.  Depending on the way you swing him, it can either cause heightened arousal or provide a calming effect.

When the boys have a bowel movement, they try to pull their diapers off. Josiah tends to pull his off due to discomfort. He will put his hands in the poo that is smeared on his skin, but he really doesn't try to explore the poo. On the other hand, Jalen sees poo as being just like mud. This video was of a very mild episode. Although, I did realize after completing the video, that the certain someone who shed this diaper also crawled into the tent that Jalen sleeps in. So... it was a bit messier than I realized when videoing. Still it doesn't compare to some of the messes we have cleaned up. 

Jalen is making yet another one of his mud creations. I let him make this mess just so our blog readers can get a sense for what we are talking about.

cho·ri·zo - A spicy Spanish pork sausage

Hola, chorizo. Como estas? Delicioso? Si.

- from Jeremy

Honestly, sometimes this blog is just one more thing that I don't have the time for. Or the energy for. Or frankly, the heart for. And I don't mean "heart" in that ministry sense like, "he's got a heart for the Congo," or "she's got a heart for reaching celebrities," I mean "heart" in that other sense. As in, "Fern had a bit of chorizo in her teeth, but I didn't have the heart to tell her since Wilbur was dead." It's probably something akin to courage, but not the courage that counter-poses fear as much as the courage that stares down emptiness and hopelessness. Mmmm, but now I can't stop thinking about chorizo.

We can talk about perspective and faith, and that's important and valid. I can no doubt convince you of the blessing of the sovereignty of a loving God, and how He has not given us more than we are able to deal with, granting His strength to help. I am quick to tell people what Pastor Karns said about how your life can shrink to the size of your problems if your not careful to keep your eyes on Jesus. And I am truly thankful knowing what C. S. Lewis said about pain being God's megaphone to the world, and we have certainly heard from Him through the struggles with our special boys. And I know, I mean know beyond any doubting, that my life was always going to be just exactly as it is, and any expectations I had for my future were daydreams and conceits. But some days it's so impossible and intimidating that I wish these boys had never been born. Or that I hadn't.

Does that shock you to read? I probably shouldn't write it, but it's true. There are times when the blessing that they are and the joy of fatherhood is totally eclipsed by the panic-level tension of living with them, and living with the people that have to live with them. Those times when Josiah has slept for three hours the night before in five sessions spanning three rooms, and he's wailed and flailed off and on for hours before he starts in with the head beating. And all I can think when I look at him is how this is going to be when he's fifteen. And meanwhile Jalen is in the back yard with a mouthful of dirt and a piece of plastic jammed in the key hole of the car door he just mutilated with a rock. And Christy is crying. Not a couple of silent tears, I mean really crying. A weary, plaintive sobbing as she pushes him in the swing. And Judah is screaming at Jack, whose big-brother playful aggravation would be overlooked in another setting, but because of everything else that he can't control and didn't ask for, it gets him in trouble and crushes his spirit just a little more. And Olivia is obviously angry. She still has to do her homework and go to bed on time even though she literally saved her brother's life today. Again. And I'm on the phone in the office saying, "I'm doing great, how are you doing tonight? Can I interest you in some life insurance?"

It's not the hardest situation anyone's ever dealt with in the history of the world. Not even close. It's not even remotely the hardest thing anyone is going through right now. But it's the hardest thing I've ever had to do. To keep on going in the face of this. To have the heart to write about it. Oh, I just remembered something. Christy said the last couple of posts have been quite serious so I should write something light and funny. It's probably too late for light now. Chorizo!

Lord, I Believe; Help my Unbelief

We thank Pastor Bob La Tour and Papa to our children for another excellent guest post.

When we cannot understand what God is doing, we must cling to Who He is.  And therein lies a problem.  It is impossible for us to think of God in anything other than human terms because…we’re human!  God is the eternal, self-existent, unchanging and invisible Spirit Who is the Source and Sustainer of all else!  Although He is transcendent to the point that he must humble Himself to even behold things in the heavens and on earth,¹ and cannot possibly be fully known or described by mankind, He has chosen to reveal enough of Himself to awe those Who go to His Word humbly with childlike faith.²  This true and living God described in the Bible is everywhere present in all of His essence at all times.³  He knows all things past, present and future⁴ down to the very hairs on our head,⁵ the words that we have spoken and have yet to speak, the steps that we have taken and have yet to take, and the things that we have thought and have yet to think!⁶ 

As a matter of fact, He fashioned us and every other human being exactly how He chose as pieces in the grand puzzle of His providence.⁶  He has the power to do anything consistent with His character, but the wisdom to do that which magnifies the glory of His unique Excellency as He directs every detail of His will.  This God, Whose unfathomable glory and holiness defy man’s best attempts to understand and describe Him, “is righteous in all His ways, gracious in all His works.”⁷  This God, Who is “clothed with honor and majesty, Who covers Himself with light as with a garment, Who stretched out the heavens like a curtain,⁸ is immanent and personal.  As the Almighty who commanded light to shine out of darkness, He has shone in our hearts to give the light of the knowledge His glory in the face of Jesus Christ.”⁹   He has transformed into children of light we who have placed our exclusive and entire trust in the Person and work of His Son.¹⁰  He has commanded us to shine as lights in a corrupt and sin-darkened world whether He brings sunshine or rain, mountaintop or valley into our lives.  To us, He is “the Father of mercies and God of all comfort, who comforts us in all our tribulation so that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.”¹¹

 

Now, that just fixes everything, doesn’t it?  Hardly!  We are flesh, and even though we may truly believe all of the above by the grace of God, we still struggle with the fact that He has chosen to send storms into our lives for the purpose of bringing glory to Himself.  We read with mixed emotion verses like Ecclesiastes 3:11.  “He has made everything beautiful in its time.  Also He has put eternity in their hearts, except that no one can find out the work that God does from beginning to end.”  Solomon realized that we struggle to see the “beauty” in some things that God ordains, and that, even though He has given us a sense of the eternal, we cannot “figure it all out” as it relates to our personal role in His grand scheme.  It is too easy to look back at the lions’ dens, giants, fiery furnaces and thorns in the flesh of Bible characters that we see as “larger than life,” and forget that they struggled just like we do.

We know by faith that there is much more to our existence than this life and, yet, from Adam and Eve’s misguided curiosity until now, mankind has had an insufferable itch to know what God knows.  There is a sense in which knowing everything would take away faith and hope and trust and thereby rob us of a blessing.  What we need is the simple transparency of the disciples when they responded to Christ’s teaching on forgiveness.  "Take heed to yourselves. If your brother sins against you, rebuke him; and if he repents, forgive him.   And if he sins against you seven times in a day, and seven times in a day returns to you, saying, 'I repent,' you shall forgive him."  And the apostles said to the Lord, "Increase our faith."  If the disciples needed increased faith in order to embrace and obey some of Christ’s teachings, then surely we do also!

When we cannot understand what God is doing, or when personal circumstances stretch our faith, we must cry out, “Increase our faith!”  Rest assured, God will respond as He sees fit.  And that is always best!  The next time doubts and discouragement and disillusionment weigh you down and distract you from the truth of God’s sovereignty, offer up this prayer of dependence,
“Lord, I believe!  Please, help my unbelief!” 

1 Psalm 113:5,6   2 Mark 10:14-16    3 Proverbs 15:3   4 Isaiah 46:10   5 Luke 12:7   6 Psalm 139; Exodus 4:10-12   7 Psalm 145:17   8  Psalm 104:1,2   9  II Corinthians 4:6   10  Ephesians 5:8   11 II Corinthians 1:3,4    12  John 20:24-29 

What is your story of GRACE?

- from Christy

Jeremy and I met while attending college at Bob Jones University. Several times a year, the University puts on a program called Vespers. A good friend of ours recently posted a link to a video that was shared in one of the Vespers programs this year. The video was excellent, and it helped me put words to the thoughts I have been struggling with for some time. Three stories of grace were shared, and the video ends by asking, "What is your story of GRACE?"

When contemplating this question, I can recall several stories of God's abundant grace being made evident in my life. All of these circumstances have built upon each other. They have caused me to know beyond all knowing that my God is good, and that He has always been faithful to me. In the midst of sleepless nights and unending meltdowns, in the midst of uncertainty about the future and heartache about questions I can't answer now, in the midst of my failings and my sin, I know that Jesus Christ has all of this planned out. He knows my every thought and every concern. He knows my grief, and He grieves with me. Our boys have been perfectly created by an all wise, all knowing, all powerful, all loving creator. Because of God's faithfulness and grace in our lives, I can honestly say that I would not change our boys. Emotions will come and times of weakness are inevitable, but, in the end, all that matters is that God is good. 

Please click on the link below, and take time to watch the video. I pray it will be a blessing to you as much as it was to me. Many of our readers will particularly appreciate the story from the perspective of a mother with special needs children.

http://www.bju.edu/events/fine-arts/vespers.php#video


Here are some pictures from our one snow day this winter! There wasn't a lot of snow, but the kids had a blast!

 

Security Part 3 of 3

- from Jeremy

One thing you must understand above all others is that safety is a goal. An ideal. A moving target of a state of being which can elude the most diligent archer. Keeping two Autistic children safe is akin to being hunted by a pack of velociraptors. It's been a long time since humans have been troubled by velociraptors (oh yes, I went there), so I'll refresh your memory. "You stare at him, and he just stares right back. And that's when the attack comes. Not from the front, but from the side, from the other two 'raptors you didn't even know were there."*

That's how it is with our boys. When you're watching Jay-Jay to make sure he isn't going over the fence, that's when Jo is choking on the bottle cap. And when you're chasing Jo down the store aisle, that's when Jay-Jay is climbing out of the cart to head the other way. Being alone with them in public is tense. And the sure knowledge of what can happen if you let that tension lapse . . . well, it's terrifying. I may write some more about this vigilance in the future, but for now let's finish the security talk with two locks that keep the boys safe from the world and one lock which keeps them safe from me.

Yes, there is a Fort Knox feeling to it. You get accustomed.

The first mechanism I'll detail is one that you've undoubtedly seen before. The simple but effective door chain. In the movies these chains can keep a 200-lb intruder frustrated on the stoop. I don't know if they'd really hold up to that much abuse, but they can keep a wandering, no-talker from wandering to death. And the reason for that isn't necessarily that the chain is strong enough to keep the door from opening at all. It just needs to slow them down. The rattling boom that the doors make when you try to open them with the chain in place is a terrific alarm and a perfect speed bump. The only problem with the chains is that they are manually operated, and therefore subject to crippling by human error.

I'm sure you're wondering what my lawn secret is. Neglect.

Another of our security devices that has been defeated by human inattention (my own, if you must know) is the outside gate lock. Now you might think that securing a drive gate is easy, but you'd be wrong. The dainty little latch that comes standard wouldn't keep a blind cow corralled. That could be hyperbole - I'm not really up on cows. Nonetheless, our boys would lift that latch and be gone in two shakes. So we use the carabiner to make sure the latch can't move. Here comes the tricky part. Because both halves of the gate swing away from the middle, you could easily push the gates apart and open having never touched the latch or carabiner. Wait, you say, does not the rod that drops into the hole in the cement keep this from happening? Only if it's long enough, dear one. The original rod left a foot tall gap between itself and the latch causing a genuine vulnerability. So we got the fence guy to bring out a new rod that can't be extracted from the hole in the cement unless the latch is open. The black part that you see between where the gates meet is the fail-safe. It makes it so you cannot close the gate without locking it. It's obviously redundant and possibly unnecessary, but this gate is the most dangerous thing around for our boys. They are constantly looking for ways out, and once they get out they be gone. So better safe and hassled than sorry.

We bought this cabinet pre-abused from Granddaddy's.

As I said, the last security measure that we shall discuss doesn't necessarily protect the boys from harm. It protects some of our more sensitive material possessions from the boys. It's the lock on the entertainment cabinet. Or as my wife calls it, the armwahr, the armwah, or the armoire. Something like that, one of those. Anyway, there's nothing extraordinary in this cabinet. A small television (26" 1080p 60Hz LCD for those who care), a cheap Blu-ray player, what I will refer to as "Jack's" Xbox 360, and a bunch of DVD's and such. It's mostly those DVD's and Blu-ray's that the lock protects. A copy of Beauty and the Beast on Diamond Edition Blu-ray will run you nearly thirty smackers. I didn't pay that much of course, but it's the principal of the thing. And Jo especially is torturous on silicon discs. He bends them and bites them, he throws them and smears things on them, and he sticks them places. He broke the middle out of Cinderella and gouged Lilo & Stitch past playability. On more than one occasion I've seen him using one as a sort of ski on the kitchen tile - silver side down. That just breaks my heart, people.

So there's security. Please let me know if you have any questions, and post any best practices and fresh ideas in the comments below. And if a kid runs past you in Walmart making a funny noise, cover the exit - I'll head him off at the candy aisle.

*The quote is from Jurassic Park, but you knew that.

Outgrowing Josiah

- from Christy

It's been a few weeks since I posted last. The biggest reason being that I've had a lot on my mind, and I haven't been sure which thoughts should be shared next. Living with this disorder causes me to never be short on emotion. It's overwhelming. My tendency to ramble is EVEN GREATER during these times, and I don't want this blog filled with my vapid ramblings. I also feel a responsibility to "post positive." Mama always said, "If you don't have something nice to say, don't say anything at all." The truth is that I feel completely broken at times while having confidence in knowing that our God is perfectly sovereign in all of this.

The title of this post was inspired by an article a friend of ours posted on facebook recently. It was written by a mom of a child living with Autism. I could relate to her perspective completely, and I felt comfort in knowing that I was not the only parent heartsick over the fact that the children around us are outgrowing our boy.

In an endeavor to let the boys run out some of their energy and have a little added social interaction, I have been taking them up to the Christian school where our oldest two kids attend. Josiah and Jalen both attended school there last year, and it has been nice the past two weeks to visit a couple of days during morning playtime in the gym. Seeing Josiah around children his same age causes me sadness that I have difficulty explaining. I'm sure I'll have this same emotional struggle as Jalen gets older too, but Jalen is still babyish. I'm sure the fact that Jalen is so smart has helped to delay these feelings also.

But it's a different story with my precious Josiah. Seeing him run around with the other five-year-old kids and knowing that they are all potty trained, and talking, and independent, makes me long for these same things for my boy. They will soon be standing in cap and gown at their kindergarten graduations, receiving their diplomas as their parents and family watch with pride. There will be no reserved seats for us on that night. These children will move through elementary school, and high school, and college. They will marry someday and have children. I would be lying if I didn't admit that sometimes I long to stop time. I long to give my precious boy time to catch up. But time just keeps ticking by, and Josiah's development continues to stay frozen.

I allow myself these moments of sadness. The pain is a reality that is best dealt with head on. And, when the moment passes, I see the beauty of my child. He has the most angelic hazel eyes that look deeply into your soul. He loves unconditionally. He has no concept of hate or prejudice. He has never spoken an unkind word. I'm his Mama, and he's my boy. I love him, and I am profoundly proud of him. I pray that I never lose sight of his beauty. The pain of other children outgrowing my sweet boy will always be there, but the joy of him being mine forever will be too.

Security Part 2.5 of 3: An Angry Sigh

- from Jeremy

I don't know if it's the same thing as worrying, or if it violates the admonition to think only on things that are true, but I've been running some scenarios around my head and it's disquieting. I know how people are. I know how much they assume about other people, how they impose their own perspective on others actions and how they project their preconceptions onto reality. I know that my motives and shortcomings will be judged without any rebuttal from me, even if no one but me knows my motives and even if my perceived shortcomings are beyond my control. So what will people think if or when my kid gets run over in the street in front of my house?

There were ten security things I wanted to post here, and I crossed three off my list in Part 1 and four more in Part 2, leaving for today's post the door chains, the special gate latch and the lock on the TV cabinet. Oddly enough, we had a breach yesterday involving two of those three. I left the house early with Jo and the baby to run to Walmart for wipes and snacks. The oldest two kids were at school. Christy went to the restroom leaving Jalen in the living room swinging. A moment or two passed. There was an urgent beating on the front door. When Christy opened the door a woman was standing on the porch with Jalen whom she had found playing in a puddle in the road a couple of doors down. Her minivan was idling in the street where she stopped it. She was undoubtedly troubled at finding a small, wordless child in just a diaper splashing in the water at the bottom of a sweeping, downhill, right-hand curve of asphalt. She did us a genuine kindness in bringing him home. We were fortunate that it was someone who's kids have visited Jack and Liv here and knew that Jalen belonged at this house. It could have gone much worse in many ways.

It's worth pointing out that none of us have ever seen Jalen unlock and then open the back door before. I've seen him playing with the knob lock on that door, and I've seen him unlock the deadbolt on the front door, but it takes some torque to get that back deadbolt to turn. And I would've bet money that he couldn't get them open even if it was unlocked. It's French doors and there's a good bit of pressure on them, to make a good seal I suppose. Olivia has to put some oomph in it to get it open, and Jalen is half her size. And how is it that he is so crafty, so opportunistic - he didn't try the door while I was home or while Christy was in the kitchen making lunches or while she was in the living room getting Jo dressed. He saw that she was out of the room and he was out of her sight and he made a break for it. It's also worth pointing out that the puddle he was in is about halfway between our yard and the neighbor's pool. And as far as I've been told, the number one cause of death for Autistic children is drowning. What if there had been no puddle for him to be distracted by?

And we can go from that "what if" to a lot more of them. As I said, a lot of disquieting hypothetical scenarios are born from a scare like this. What if he'd gone to the right out of the yard? Rogers Road is just four doors up. The cars go pretty fast down Rogers Road, and it's not just our neighbors that use it. What if he'd been hit? What are the odds for a forty pound pedestrian against a two thousand pound automobile - even at twenty or twenty-five miles an hour? What if the person hadn't known of us? What if they'd taken him? What if they'd called the police? The police are not the arbiters of justice, they are not the ones who decide if a child has been injured due to negligence, they are the ones who put the child in protective custody and the parents in jail until such things can be decided. What if we couldn't explain how smart and sly Jalen is when he appears so vacant and clumsy? What if we couldn't convey our genuine surprise at him being gone since he's been gone before? What would people say we should have done? Maybe not to our face, but in their homes and over their meals with friends and when they tell the story at work or in the church hallway - what will they assume? They'll feel bad for us, but what will they question about the way it happened? Which of our many minor shortcomings will be cast in a new light by some major perceived failure? And on and on.

It's a short trip from this kind of speculation to out and out fear. A lot of times we call fear by it's cousin's name: worry. But it's still fear, and fear is the opposite of faith. Both of them are attempts at seeing the future, but fear reaches toward the future expecting to find something bad whereas faith expects something good. I learned that from Zig Ziglar. Faith is not an unreasoning optimism or a carefree ignorance. It learns from experience and adapts to the struggle. Faith says a prayer of thanksgiving that something worse didn't happen and then steps-up its game to make sure something worse doesn't. And faith expects that if it learns from this present trial, then there is nothing of it to fear in the future. Faith hears the "what ifs" and responds with a reminder of what is - that God has been good to this family every single day.

I'll be back with part 3.

Security Part 2 of 3: Improvised Ehh . . . Devices

- from Jeremy

When in the course of Spectrum parenting, it becomes necessary for one people to concoct protective bands around another, and to assume that no amount of watchfulness will be sufficient to prevent escape or injury, a decent respect to the opinions of mankind requires that they should declare how in the deuce they came up with such things. That sentence is much better if you read it in the voice of Henry Higgins.

So today we shall focus on the ways which we have had to invent to keep our space monkeys safe. Mechanisms that were not intended necessarily to keep Autistic kids unharmed, but which do. In every case, the solution I will reveal is an evolutionary triumph. That means we tried lots of things that didn't work. Like the other evolution people talk about, it's really all in your mind - these devices exhibit intelligent design. (Comments are enabled below. Fight! Fight! Fight!)

Here's a problem for you. The water bill said we were using over 12,000 gallons a month. To help you conceptualize that amount, it's equivalent to a couple of those big gas tanker trucks you see on the highway. Now this was during the summer and a lot of that water was going into the wading pool for Josiah. But a lot of it came from the spigot which I would find on when I left for work in the morning. Who would do such a thing? An alien race bent on destruction? That's close. So we tried a few solutions that didn't work worth a hoot, and then Uncle Jon came to the rescue (not uncommon) with a sillcock blockade of industrial strength. I think it's meant to secure chemical bottles or something. Nobody's getting any water out that thing. Nobody.

So Jo does this adorable thing of when he wants some Kool-Aid - he takes the gallon jug and pours it out on the tile. LOL, right? And Jalen makes the cutest little raw egg drawings in the light of the refrigerator's open door. You can imagine how well it works to ground them for these infractions, or to shout at them about it, or to show your frustration by pulling your own hair and rasping expletives like Yosemite Sam. We've tried them all. And the pathetic little fridge locks in the pathetic Safety 1st section at Walmart are pathetic. They might keep an 18-month-old typical kid out, but don't stand a chance against a 5-year-old ASD bruiser with no thought in the world but Get. In. This. Fridge. So I found a website that sells locks for keeping Schedule 1 narcotics away from patients and inmates. Now the fellas have a better chance of busting the door off the hinges than yanking it open by the handle.

Most people who know us are aware of the struggles we've had with Josiah and sleep. Let's just say he doesn't have any natural talent for it. Josiah is also what is called self-injurious. That means that when he gets distressed he does kind of a solo UFC thing. Only he never taps out. And any kind of restraint makes him angrier. Jalen on the other hand, has never intentionally hurt himself and he really doesn't mind restraints. He doesn't exactly sleep good, but it's an easier problem to solve than Jo. With Jo you have to soothe him and placate him and swing him and medicate him, but with Jay you just have to keep him in the bed. Jo, upon waking, immediately finds Christy wherever she is and wakes her up by whatever means. Jalen would be gone like Lamont Cranston. We went through a lot of different iterations of jail bed before we found the current one. It's meant for unpopular people to use when they go camping.

And the "lock" that keeps him from unzipping his way to freedom and mischief is actually a quick-release key chain (and it took quite a development process to arrive at that little beauty). And he's always liked his little dens. When you say it's time for bed he grabs a book and climbs right in. So what would happen if Jay-Jay woke in the middle of the night and wasn't somehow hemmed up? We're afraid to find out. He's really bad about climbing things, he's gotten out of windows a few times, he knows how to unlock some doors and he's really fast out in the open. He's pretty and cunning - you don't want to go to sleep with him loose.

Believe it or not, there's more. Come on back for part three. I'm thinking Friday-ish.

Security Part 1 of 3: Locks of Love

- from Jeremy

The home security salesman on the phone was stunned to silence. I told him that I wasn't worried with keeping people out of my house, that I was needing someway to make sure that no one can escape. "What do you offer in the way of concertina wire?" What I really need is one of those concrete moats they put around the polar bears.

So how do you keep a 5- and 3-year old safe when they wouldn't know safe if it flew up on a broomstick and handed them an fresh apricot? How do you convey the concept of looking both ways before crossing to a child who won't look at you when you're talking and wouldn't know what you're saying anyway? How do you keep them out of the neighbor's pool? Or out of the cabinet where the gummy vitamins are? And why do they like the gummy vitamins better than actual gummy snacks anyway? Do they just know that they're more expensive? Can they taste my frustration?

So here is a post for all you parents of road runners and dirt tasters, for all you care-givers to bookshelf climbers and escape artists. Here are some ways we keep the asylum perimeter secure and the inmates accurately counted.

This is how we keep the medicines and vitamins and straws from all getting chewed before their time. Plenty of parents use these cupboard locks, but we have to double up on some of them. It makes it a pleasure to try and grab the salt shaker with one hand and hold your plate of goulash in the other.

Gangstas have spinners on their whips, but gangsta parents have spinners on their linen closet doe knobz. Our "new" house has 12 doorways in the hall, but behind only 2 of those doors are towels that we like to fold only once per wash and fitted sheets that are hazardous when dragged onto the tile. Jo can actually open these, but it takes him a few noisy tries.

This is the way to keep the junior staff out of the management only areas, and it used to only take the bottom one. In actual fact, these gates are water control devices. In the daylight hours it keeps the tub from running nonstop, and during the third shift it keeps the floor in front of the kitchen sink from becoming a slippery trap.

Stay tuned for the moat installation.

Another Side of the Fight

- from Christy

So the biggies had been accomplished. We had determined that something was wrong with Josiah's and later Jalen's development. We had gone through several evaluations for both boys. We had received the official diagnosis of Autism for them, and we had set up therapy. At that time, I thought we had everything in line. I had no clue that the battle was really just beginning. You see it's not enough that your child has Autism and that your weeks are spent driving to and from therapy. A HUGE part of being a parent of a child with a disorder or disability is the responsibility to fight for state and federal services.

SOCIAL SECURITY! I will be the first to admit that I am not the sharpest tool in the shed. There are plenty of things that I should know or need to learn more about. Social security was and is one of them. Perhaps it is because I really have only worked part time jobs and I worked those jobs LONG ago. After graduating from high school, I was off to college where I met Jeremy. We were married after my sophomore year, and I was pregnant with our first bundle of joy the last semester of my senior year. We have been growing our family ever since, and I have been a stay at home mama the entire time. Jeremy has always taken care of the finances, and I have never had to concern myself with handling the taxes and such. Enough with the excuses! 

I can remember sitting at the CDSA after Josiah's evaluation with our angel of a service coordinator. She advised Jeremy and I that we needed to consider looking into getting social security income (SSI) and medicaid. I actually said to her that we had really good insurance, and that I didn't believe that would be necessary. Little did I know that MOST insurance companies do not cover medical or therapy costs associated with Autism. Autism is seen as a disorder that is pre-exsisting and habilitative. "The word 'habilitative' has been at the heart of health insurance coverage denials for children with autism. Health insurers typically claim to not cover 'habilitative' care and often deny coverage for behavioral therapies as the care is not 'rehabilitative.' Insurers describe 'habilitative' services as educational or long-term care services, both of which are non-covered services. 'Rehabilitative' services are defined as those used to treat a condition that is a result of an injury or illness and are covered services."* Because Autism is considered a disorder that causes development to be delayed or not to come at all, the development was never there and therefore does not fall under the category of a rehabilitative condition. In layman's terms: the insurance companies don't have to pay! 

You may now be asking the same question that we did: how can we get our children what they need without the help of insurance?  The answer is applying for SSI. If you are approved for social security income, then you automatically receive Medicaid. There is always a catch though. SSI is approved based on household income, and not on whether a child has a disorder. You end up having to choose to make a certain amount in order to stay below the income limit. If you go above the limit, you loose SSI, medicaid, and services. When Jeremy was given a job offer from his last place of employment, he actually had to ask them to reduce the salary they were willing to pay him. AHHH! You see the decision is either make something like $30-50,000 (depending on the number of children in your home) and keep the SSI, medicaid, and services, or find a job where you can make at least $150,000 to afford the medical expenses and services not covered by insurance.

Many states now require insurance companies to cover medical and therapy expenses associated with Autism. North Carolina is not one of those states. Jeremy and I are going to post a link to a letter that one of our blogging friends wrote to plead for NC legislation reform in this area. Debby also gave some great tips for contacting the Senate and House of Representatives. If we all do our part, changes may actually occur. By the way, Debby has a son living with Autism. Her family just lost their SSI, medicaid, and services last week. 

To end this very lengthy post on a bright and hopeful note: we do not have to be fearful. God is not surprised by the multifaceted difficulties of raising children with this disorder. We are confident that He will continue to be faithful. Fighting for services has been a very humbling side of Mama-ing these boys, but what a blessing to be stretched in this way. I Peter 5:6-7, "Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you."

DEBBY'S LETTER (be sure to check out the link at the top for tips on how to help):
http://www.everybodysboy.com/2012/01/07/an-open-letter-to-north-carolina-general-assembly/

*from HABILITATIVE? – IS THIS THE RIGHT QUESTION FOR CHILDREN? by Michelle Winchester, J.D.

I thought you might enjoy some pictures of the kids playing at the park last week. They are growing up WAY to fast!