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!