- 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.
Saturday, January 28, 2012
Wednesday, January 25, 2012
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.
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!)
Believe it or not, there's more. Come on back for part three. I'm thinking Friday-ish.
Monday, January 23, 2012
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.
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.
Stay tuned for the moat installation.
Thursday, January 12, 2012
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.
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.
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!
Thursday, December 29, 2011
Christmas 2011
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!
Wednesday, December 14, 2011
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.
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.
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.'"
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! |
2 Corinthians 12:9, "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'"
Saturday, December 10, 2011
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.
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:
 |
| Meemaw and Jo in the snow. |
- Pray often for your children and grandchildren. This can be done no matter how far away you live.
- 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!
- 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.
- 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.
- 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.
- Have a sense of humor! (I have to admit that can be difficult when a “Poo Digger” was not worn and should have been!)
- 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.
- 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.
- 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.
- 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.
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| Meemaw with Jay back when you could hold him still. |
Tuesday, December 6, 2011
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!
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! 
Friday, December 2, 2011
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."
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.
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 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.
Monday, November 28, 2011
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.
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.
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.
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. |
But sometimes I think about mixing some Ambien in the Kool-Aid.
 |
| On my mark, share the Cheez-Its. |
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. |
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