A long time coming...

This post is a long time coming. In fact, I doubt anyone ever reads this anymore because I've been sporadic - at best. But my "hit or miss" posts are chronicle our lives, and someday my kids might care. So, I post. Randomly.

I like California.

I am not such a big fan of typical public schools. Oddly, this surprises me. It shouldn't, but it does. This opinion is an old one, well formed, researched and entrenched. It began before I graduated from college while still in the Department of Education at CU. I did my practicums in middle schools and the Juvenile Justice Center and I saw things. These things disturbed me and kept me up at night. Mostly, I discovered that, while school was okay for lots of kids, many, many others suffered there. Literally, suffered. Anyone who fell outside one standard divination of the bell curve was well and truly marginalized. Gifted. Learning Disabled. Short. Chubby. Physically handicapped. Clutzy. Poor. Doesn't matter what the metric for normalcy is; kids outside of it suffer.

Actually, my own public school experience was kinda sucky. So, maybe my opinions started far before college, and were formed in Kindergarten, when I fell outside the norms. If people had been in to diagnosing ADHD then I might have received the label. But I was ADD before it was trendy, and I was a girl. I was well behaved. I just struggled. I felt stupid through high school, and it wasn't until college that I realized that I was actually smarter than most of my peers. Luckily, I had a really stable home life and my parents made some good moves to help me negotiate the war zone. I survived public schools, and even have a few fond memories. Yet for me, on a very basic pimal level public schools = scary and unsafe.

Now things have changed since I was a kindergartner, and even since I was an undergraduate. Policy has sifted. No Child Left Behind rules the day. Standardized Testing guides the classroom. Now kids on the margins shouldn't fall through the cracks. But they do. Oh, but they do. School isn't a good place to be something other than Standard.

Before, these opinions were largely academic. Here and now it has become deeply personal.

I have a child on the margins, and I watch him suffer.

Last year Caleb was a first grader, and a homeschool kid. We home schooled that year out of necessity, not from a place of joy. Basically, I brought the curriculum my kids were using at school home, and we did school at home. (Which, if you are a homeschooler you know, is not the same as homeschool, but that is a post for another day). Anyway, I watched Caleb progress slowly. I kept telling Eddie, "Something is not right here." But Caleb was basically content. By the second semester I knew I needed a shift. I started moving back to true homeschool (or at least true to me homeschool) and I had Caleb evaluated for ADHD. We put him on stimulants and watched his academic performance excellerate rapidly. Unfortuantely, the meds had sidefeffects that were intollerable. Caleb couldn't sleep. His eye began to twitch, which I later discovered was "ticking" and often a precursor to the onset of true Tourettes syndrome. Anyway, we took him off the meds, and hoped that we would find solutions and relief at the Gifted Charter school he would begin as a second grader.

Westgate (the Charter school) is a school based on universal design and employs the best practices of both gifted education and special education in the typical classroom. And, um, there were a lot of quirky kids there. Basically, it was a school for kids on the margins. Quirky was cool, or at least very acceptable. Caleb was doing okay there even without the meds -kinda.

Then we moved, and put Caleb in Public School.

And within a week we saw him flounder, fail, and begin to sink. He developed headaches, stomach aches, nightmares, and serious school anxiety. He was really, really behind and confused. I watch him walk around in a fog. Actually, thinking back, I remember the fog. it's a feeling I haven't had since my own public school days. Phychologists call it disassociating. Basically, I checked out. My body was there, but my mind and heart were elsewhere. School sucked, and though I physically had to be there I could choose to be elsewhere too. On those days I lived my life in 3rd person. I have seen my son do the same, and I remember the pain that was the precursor to the fog. And I am determined, my son will not live a life in 3rd person, he will not be a person of the fog.

So we've looked back into medication. And we've found a med that works for ADHD that is a non-stimulant and doesn't lower the threshold for ticking. For now, Tourettes is held at bay. And the new med is working. We're seeing slow and real progress in Caleb's ability to attend.
We've also had him evaluated by an audiologist and found that he does have a real auditory processing struggle. The sound of school is a challenge for him - it's a jungle of noise. For now, he has no guide book, compass or map through it. The school has been responsive, in their slow and beauracratic way, but they teeter on gray legal area, and they are a machine that will not be deterred. They are a locomotive on the tracks of standardization and policy, and my son might be a casualty.

I am faced with 2 options.

A - Hop on the train, like a ho-bo. And use my influence to direct the choices of the school. But like a train it has mass and inertia that is not easily influenced.

B- Get off the tracks, and help my son without the resources or policies of "THE DISTRICT".

And it's decision time...

Downward Mobility

"To mature as a follower of Jesus means to be led to the same powerless places he (Jesus) was lead. It means the road of downward mobility in the midst of an upwardly mobile world. I do not say this with sadness, but joyfully, because the downward road of God is the road on which he reveals himself to us as God with us...

Nobody wants to be on the road to downward mobility. It costs too much. If you aspire to it, you don't understand it. It runs counter to the road we desire to travel - the one that leads to upward mobility. By right, we should get to pass important mile markers that measure our success - marriage, babies, career, house, better career, bigger house. We should be on our way. So why would Jesus ask if we love him, and then, if we get the right answer, promise that we will be carried to a place we don't want to be?"

-M. Craig Barnes, When God Interrupts

I've been thinking, "How do you make church relevant in culture?" The question is tricky, and the answer is even trickier. Here's why:

Doing "relevant" church runs the very real risk of becoming "McChurch, I'd like fries with that." We can become Drive-Thru Jesus.com because we want to speak to the American Consumer. So, we are tempted to make church into a product to be consumed. Makes sense, kinda. Phenomenal messages, excellent children's ministry, hip worship done well, these things DO get butts in seats. It looks like success. The problem is that once the proverbial "butts" are in seats, they stay there - mollified by the spiritual equivalent of Krispie Creme Donuts. Our church communities become anemic, malnourished and obese all at once, and we have done it in the name of relevance.

The Good News that God is With Us,and For Us is utterly relevant. But God is on the move and if we are to be Christ-Followers then spiritual butt sitting will not do. In a place like Colorado, an invitation to join a spiritual journey/adventure appeals. It fits with the culture of this place. We ski, and hike, and mountain bike, and kayak. We do adventure.

Except...

The road of the disciple is one of downward mobility. Always. And that is not an easy sell to any culture anywhere. It's one thing to tell a people, "Get off your fat asses and join the adventure." It's quite another thing to say, "By the way, the road we're traveling will likely put to death the dream you had for your life. It will be harder, longer and more treacherous than you ever imagined. In the end, it will cost your life."

"Would you like fries with that?"

McChurch, and real discipleship don't mix.

This does not mean our messages should be lame, our worship tacky and outdated, and our children's ministry pathetic. Excellence matters. But I'm not sure we can ever be trendy. "Come and die" doesn't lend itself to trendy. A promise of downward mobility doesn't make for good copy in brochures and door hangers.

Case in point:

-God called our family to adopt.
-We did.
-It was hard.
-It will become harder.
-Hard will last forever.
-Part of that hardship was the fact that the dream I had for my life had to die.

Today, we met with the physician overseeing our daughter's multi-disciplinary evaluation. I was expecting one diagnosis. I got 4. And one more looms in the future. We have a virtual alphabet of disorders with acronyms. These acronyms spell out a future full of therapies and challenges, challenges that will never be outgrown.

In our daughter we received the gift of downward mobility. Moments of this have been excruciating. Yet, I have found the quote I began with to be true. As we have followed Christ on this path of downward mobility, I have encountered the Living God more frequently, and more potently than ever before. I have met my God here, on this road littered with the skeletons of dreams decomposed.

Put that on a brochure.

What is normal?

I haven't been blogging much lately because all I have to say is sort of depressing and un-fun. Depressing and un-fun is okay now and then in bogger-world, but really, nobody wants to read that all the time. I wouldn't want to read it all the time.

So you have been duly warned.

Yesterday, I went to the grocery store with my littlest. This is always a challenge, so much so that I have totally forgotten what it's like to buy groceries like normal people do. I know as I go from isle to isle people think, "That is a seriously bratty kid, why doesn't her mother put a stop to the behavior." Several years ago that is what I would have thought if I had seen someone like me walking through the store. But I have learned that what you see is not always the whole story.

First, you must know, grocery stores are almost intolerable for youngest. There are unusual and unpredictable sounds. There are too many people. There are weird florescent lights and transitions at every turn of the isle. It is overwhelming on every level and Abby becomes dis-regulated quickly. Dis-regulated is therapeutic parenting speak for when a kid cannot manage what's happening on the inside (i.e.anxiety or nuero-chemical wackiness) or outside (environment) appropriately. Disregulated kids shut-down, or rage, or act really bizarrely.

Now all of us are constantly "regulating" our responses to internal and external stimuli. For instance, loud parties stress me out and make me feel anxious, so I prepare mentally before I go. I find corners to hide away in when the noise becomes too much. I "regulate" my response.

The trouble for kids of trauma, SPD, or brain damage is that they are working with severe disadvantages. Their cortisol, nor-epinephrine, dopamine, and seretonin levels can be totally wacky. From a chemical standpoint they are unable to regualate. Add in a little post-traumatic stress, or dysmaturity and you have a DISASTER in the making. And were not even addressing the sensory regulation that should be happening in the brain stem (but isn't) or the frontal cortex that misfires and causes poor impulse control. Bottom line: what you see as the behavior of a bratty or weird kid, but there is so much going on behind behavior that makes it impossible for kids to meet the expectations of society.

So when you see my kid screaming and hitting at the grocery store please know that both my daughter and I are working extremely hard to keep it together. We've worked hours to even be at a place to make it through. Before we even get to the store we have done "heavy work" or spent time in the therapy swing. We've done joint compression to change brain chemistry.

My daughter will probably go through an entire pack of gum because the chewing motion changes brain chemistry too. She might be wearing tight leggings and no shoes. I do not need your two cents about how to keep my child warm. Her lack of footwear is intentional. It helps her regulate. She might have a potty accident or two, or she might be four years old and wearing a diaper because she literally cannot manage "potty" stuff with everything else going around her Abby might be belligerent, run away, or scream and yell. Please know that we do not allow the behavior, but spanking is entirely ineffective. It might look I am using distraction or bribery; I am. Because when my daughter is overwhelmed typical consequences cause her freak out even more. It would be like trapping a wounded animal in a corner... a stupid thing to try.

You take going to the grocery store for granted, but for us it is a major feat. It takes 2 hours, and one melt-down screaming tizzy fit is progress for us. We've worked hard for that. We will both come home exhausted. We will talk it through, and roll play appropriate responses. And next time it may, or it may not, go any better.

Another good post I didn't write.

HERE is another good post. Somehow when talking/writing about prenatal exposure its easier to refer to others. I've done the research. I've got crazy documentation that no one will see but Eddie and I. I am not a loon, at least at not in this regard.I know what I'm talking about. However, I FEEL like a crazy lady, like what I know and have learned is somehow not credible.

Babycakes is in a really good season. We've incorporated some parenting techniques that are transparent to others but essential for our family. No one sees what we see. But they WOULD see behaviors if we weren't doing what we are doing. Invisibility - it's one of the trickiest parts of this whole deal. It's like catching mist.

Well said..

She said it better than I could....so just read it HERE.

Not Your Neurotypical Kid

I finally got an appointment.

We've been waiting for our littlest to get an evaluation by Children's Hospitals Child Development Unit. It's multidisciplinary, multi-day evaluation is the best at diagnosing the cause of quirkiness neurological issues in kids.

Let's be honest: we've all got quirky neurological issues.

But my baby girl has diagnosable issues. I've hesitated to share them here, because I wanted to preserve my daughters privacy. It's her story, and there are many pieces of her story that will remain hers alone. But there is a need for the people that love her and interact with her to understand what is going on, so they can help her.

Abby has organic brain differences - damage. It's caused by exposure to damaging substances while she was carried by her birth mom. Most people would not be able tell by looking at Abby that her brain works differently. And, in fact, IQ tests would not identify these issues. She's got a normal IQ; counter intuitively, this does not negate the damage.

People with this kind of damage have predictable behaviors that are a result of organic brain damage. They include:

-Poor impulse control. They will steal, because they have the impulse to take with no thought to the consequences, or even that it's wrong to take what doesn't belong to them.
-Difficulty with cause and effect reasoning. They literally do not always learn from mistakes, so punitive disciple is totally ineffective. Punishment doesn't work because it assumes cause and effect reasoning.
-Difficulty understanding abstraction. Concepts like money, time and ownership are a challenge.
-Rigidity. Abby has a strong need to finish things, or do them in a certain order. She really, really struggles to make transitions. Almost any change is stressful. This is very typical.
-Sensory Processing Dysfunction.
-Auditory Processing Dysfunction. They may appear to understand you, but chances are decent that they haven't understood fully at all.
-Dysmaturity. Often there developmental age is far younger than their chronological age.
-Memory Problems. What was that rule again? Oh and it applies at home and at school?
-Communication Problems. Their oral communication surpass their ability to understand language. So it appears that they have good verbal skills and are understanding instructions, but they don't. This is often mistaken for defiance.
-Difficulty regulating sleep wake cycles.
-Unpredictable good days and bad days.


All of these struggles present in behavioral problems. On a bad day it appears that children with this kind of brain damage are spoiled, naughty, and out of control. As adults, the same behaviors can land a person in jail. It is all too common.

Eddie and I are learning that to effectively parent this little girl of ours we MUST look beyond behavior. Behaviors are cues that tell us she needs help. So we're learning NOT to parent behavior, but instead parent needs. It's a gigantic paradigm shift, and difficult to do.

So when Abby gets out of bed 6 times after we've told her not to, we are tempted to give her greater and greater consequences. It's usually totally ineffective. Warn. Spank. Bark orders. Threat more consequences - it just doesn't work. We've got to remember her brain is damaged so sleep is hard for her. Impulse control is hard for most preschoolers, and nearly impossible for her. Plus, she truly may have forgotten (though in her case - I doubt it.).

What works? Predictable routine. Simple language. Repetition. Warm milk. Melatonin supplements. Baby gates. It is far easier to avoid the problem all together, by setting up our daughter for success.

We would accommodate the needs of a child who is a paraplegic. We'd build ramps, and buy wheel chairs, and modify the layout of our home to allow for the most independence and success. Organic Brain Damage must be seen in the same way. The brain is somewhat pliant, but the damage is permanent. We must create an environment for success.

We keep our home calm. We establish routine. We lock up dangerous items, and secure doors. We use simple language. We repeat. We offer grace. We model correct behavior - try to move daily independence activities into long term memory. We minimize transitions, and are careful to not take Abby places where she will go into sensory overload if she's having a bad day. We learn techniques to help her regulate.

And most of the time, if we're doing our job well, and she's having a good day, you wouldn't be able to tell she is anything other than a typical kid.

Special Needs and Bazooka Bubble Gum

So kid number 4 has a challenges regulating, and transitioning. Sugar-free gum helps. I know it's weird, but it's true. I mentioned that gum theft had been on the rise in our house to our therapist, and she pointed out that chewing gum actually helps sensory seeking kids regulate.

So we bought lots of Trident.

Whatever works. And, oddly, gum does work.

Unfortunately, kid #1 recently purchased Sugar-FULL Bazooka bubble gum at the Dollar Store with Valentines Money. Now we've taught our older kids that if they really care about something it needs to stay somewhere unattainable to kid #4. We'd love to guarantee that personal belongings are shown respect in this household. We're working on it, but in the meantime, you better just hide the stuff you really like.

Bazooka Gum did not get hidden properly.

Now Abby-girl has an earlier bedtime the rest - it helps with our sanity. Unfortunately, she was in non-compliance mode. We put her to bed. She snuck out of her room and promptly proceeded to chew 20 or so pieces of Bazooka Sugar-FULL. Now, as your probably aware, most people cannot fit 20 pieces in their mouth simultaneously. This is the case with our small-boned 3 year old. So, being the clever problem solver that she is she chewed 10.

And then she stored those 10 in her HAIR while she then proceeded to chew the other 10.

Abby is sporting a new, and rather cute bob haircut today.

I just got the scissors and cut a chunk of hair out (it could be fixed later), then loaded kid #4 up on extra melatonin. (Melatonin is the herbal supplement that doubles as miracle drug for families parenting kids from hard places - WE ADORE IT.)

Now here's the weird part:

The consequence for blatant naughtiness was a cup of warm milk and these words, "That gum belongs to Ethan. It doesn't belong to you. And gum is not for bedtime."

Because I know she'll swipe stuff again. I know she will wander the house again when she is supposed to be sleeping. I know we won't take gum away from her. I know that stiff consequences won't fix a thing.

Sleep issues will be the norm.
Trouble understanding ownership will be the norm.
Impulse control trouble will be the norm.

In these early years it is Bazooka Sugar-FULL. NOT A BIG DEAL. And I pray that God will protect my child as the years progress, and weight of consequences are much larger than we can imagine.

So it's baby gates, better hiding places and more melatonin. It's prayer for wisdom.

This is so not how I would have parented #1,2 and 3. And it's impossible to know where to make allowances for brain differences and where to enforce tough consequences. We're winging it here.

So if you see as making weird parenting choices. Offer grace. It's possible you do not know the whole story. It's possible that it is not as simple as you perceive it to be. It's possible that in our shoes, you would be making the same decision, and praying for wisdom too.

Aspergers

Today I met a kid on the autism spectrum. He explained to me why some pennies are shiny and some are not. It's some kind of chemical reaction, or something. I didn't get it.

A minute or two into this explaination and he got a "look" from his mom. "Too much.", she said.

He sighed, stopped, and explained, "My mom has a "3 facts a day" limit."

Then he walked out the door.

Awesome.

Children's Hospital Development Center

I got "the packet" from Children's today. It's ahmmm....not short. I will spend a large chunk of tomorrow filling it out. Then "the packet" goes to a team of experts to be evaluated. Then we get "the evaluation"; it's an all day deal where Princess, and her respective parental units get... well we get evaluated.

I don't know the results, and I don't know if we will get a "diagnosis" but just reading through the packet was affirming. I am not making stuff up. There are legitimate things in my youngest's medical history and family history that contribute to the stuff we see. It's documented by medical doctors, occupational therapists, and social workers. It's real.

Funny how I can trick myself into thinking that nothing is wrong. Abnormal becomes normal and we forget...
-most people don't have to drug their children to get them to sleep (well technically herbal supplement them...but whatever)
-most people can take their children into a store without them becoming unglued.
-most people do not plan sensory diet events into their day.
-most people don't walk into a new situation with a transitional item in place.
-most people don't start every every morning the very same way because change sends their little one into "behaviors" that aren't worth a few extra minutes of sleep.
-most people can ask their children "why?". (we tell "what")
-most people don't have to frame every stinking thing as a choice.
-most people aren't on hyper-alert all the time for when their child might impulsively do something to hurt themselves or others.
-most people aren't kinda expecting to change their child's diaper till she's 6.

But because we've developed a hefty repertoire of coping strategies and parenting tools that might look weird to others our lives operate relatively smoothly. Normalish. Nearly invisible differences. Yet, you take away the crutches and holy guacamole; chaos abounds.

I promise to stop blogging about this soon, but it's on my heart right now.