seizures – Lux, Libertas

Tonight, all over the world, public buildings and famous landmarks are “lighting it up blue” for autism awareness. It’s a gesture that’s always irked me and that does ~~nothing~~ little for the autism community. But hey, we get a day.

I’d like to share how we acknowledged this day around our house. Around the time that the seizures began, Sofija started waking up at night. Her nights have grown shorter and shorter over the last several weeks and as of this morning we’ve gone four straight nights without sleep. Pray for us. I’m deliriously tired and my written communication is MUCH more coherent than my verbal at this point. In an attempt for us all to get some rest, we granted our princess’ wish to climb in bed with us around 4am. We have a queen-sized bed, y’all. Baby girl is 5’8″ or so tall. Ummm… yeah. No sleep was happening. Around 6am, after much tossing and turning I felt my back growing damp and warm. That’s what I get for buying cheap generic pull-ups. After cleaning us and the bed all up, sweetness decided to break a lamp and pour water all over the carpet. Then she spent four or five hours attempting to bite and hit herself. In case you aren’t aware, this is autism. A couple of days ago autism looked like a rockstar selfie-taker…

In between seizures, and sleepless nights, and self-injury, that girl is the most charismatic thirteen year old girl around. Today was a very autismish autism day, but every day is not like today. Some days with her are filled with dancing, and laughing, and nail painting, and wonder. That’s the way autism works. People on the autism spectrum can often move around on that spectrum.

On the opposite end of the spectrum, autism awareness looked like this today…

That man-child is the King of Cool with the BIGGEST heart on this planet. His doctor challenged him to drop a few pounds this year. He started walking all over our island for several hours a day and watching his carbs. He just weighed in and in three weeks he lost a little over ten pounds. He’s my hero. Today, while his sister was doing her darndest to make the world (or at least our neighbors) aware of all that can be hard about autism, our boy was busting his butt to get ahead on his schoolwork even though he had the day off. He kept headphones on all day and paced around the pool listening to an audiobook when his sister’s meltdowns overwhelmed him. There were hours today where he looked like a typical seventeen year old boy. And there were moments when I saw him stimming and fighting pretend battles (complete with sound effects) all over the backyard. That’s how autism works. People on the autism spectrum usually fall into a specific developmental range, but just like every other person on the planet, they have good days and bad days and peaceful moments and moments when they are overwhelmed. Their good and bad and peace and overwhelmed just might look a little different than yours or mine.

With the number of people in this world on the autism spectrum, I really can’t imagine that there are many people who aren’t “aware”. However, there are far too many people who believe that autism always looks like the characters they see in movies or on television. When I tell people that my children have autism, without fail, they ask, “What are they good at?” That question has often stumped me. But if you really need to know… The boy stimmer is really good at beatboxing and video games. The girl stimmer is really good at kicking our butts.

If you’ve read this far and you really want a little more “awareness“, here ya go:

More than half of people on the autism spectrum have an IQ below 70.

30% of people on the autism spectrum never speak more than a few words in their entire lives.

By conservative estimates, at least 20% of people on the spectrum also have epilepsy.

The average lifespan of someone on the spectrum is 36 years.

90% of childhood deaths in autism are due to drowning.

And then there’s the cost of caring for a child or adult on the spectrum. On top of the thousands of dollars we spend each month for behavioral health, autism has cost us dozens of lamps, five or six televisions, several iPads, a couple of iPhones, two Macbook airs, gallons of spackle, countless drywall patches, an entire tiled wall behind a bathtub, two beds, four mattresses, several shoes thrown out of car windows, the steering column on a Land Rover, all of the A/C vents and radio controls in the same Land Rover, a few chairs, a dresser, dishes galore, etc., etc., etc…

Autism has also cost us more relationships than I care to count. But, after those who just can’t handle our family were sifted away, we were left with pure gold. We have an amazing village of people that are very much aware, who seldom grow compassion-weary, and who love our stimmers both for and despite all that they are. For the gold in our lives reading this, thank you for being our village! For those reading this and living in the autism trenches, find your village, embrace your village, and know that it’s okay for the sediment to sift away. Our kids need us to be their biggest fans and it’s really hard to be a fan if we have to spend all of our time apologizing for them.

I’ve been asked what I would want people to know if they see us in public and have questions about our children’s behavior. If you’re not lucky enough to bump into us out and about and have me scream-answer your questions as I’m sitting on top of a woman-child in the middle of a department store to keep her from ripping my hair out, here’s what you should know:

We’re okay with questions, but we’re not okay with condemnation. If you think we’re weird or we make you uncomfortable, please just walk away and talk to your neighbor about us when you get home. If you see a parent managing a difficult behavior and you desire to help, ASK FIRST! Follow the parent’s lead and instruction and respect their wishes if they ask you not to interfere. We SO appreciate a stranger’s willingness to help, but sometimes help can do more harm than good. We NEED encouragement. Chances are really good that there is some area of your life where you could use a little encouragement too and when you tell the dad holding his squealing son on the bench outside the grocery store that he’s doing a great job you’ve sown a seed of encouragement that you will surely reap. PLEASE have compassion. You’re teaching your kids how to treat our kids by the way you treat every parent or child that is different from you. Teach them well.

Be aware. Or beware. Or whatever.

~~Happy~~ ~~Good~~ ~~Joyous~~ Rocking World Autism Day 2018!

Tomorrow, March 30, 2018, is the beginning of the Jewish Passover. Passover is a celebration of freedom commemorating when God liberated the Jewish people from slavery. You can read all about the Passover in scripture HERE, but the gist of why it’s called “Passover” is that the Jewish people were to put the blood of a male goat or sheep around their door frames so that their homes would be “passed over” on the night that God delivered judgment on Egypt by killing the first-born child of each home. The homes covered by blood were protected from judgment.

I’m not so great at Bible timelines, but around thirteen hundred years after the Jewish people were freed from slavery, on the first day of Passover, Jesus had dinner with his disciples, washed their feet, and told them that one of them was about to betray him. On the Christian calendar, that last supper is commemorated today. So yeah, it’s a good day to wash someone’s feet. 😉 In the three days following that last meal, Jesus was betrayed, tortured, beaten, crucified, and on the third day arose from the dead. For those who believe that Jesus was crucified and resurrected so that we may have eternal life, our passover looks like a cross and an empty tomb. The blood of Jesus spares us from judgment.

I sat today and read the story of the crucifixion and I was brought to tears. I just kept thinking about God the Father witnessing his son being tortured and killed. He allowed the horrors of the crucifixion so that every human thereafter could live in the freedom of the resurrection. He watched and waited because he had complete faith in His ability to fulfill His promises. As a parent, I can’t even imagine.

At the moment, I have one prodigal child and one that has recently developed epilepsy. In both situations I’m having to make daily (sometimes minute by minute) choices. I get to choose fear, or I get to choose faith. In all the choosing I’m also doing a whole lot of seeking wisdom.

Parenting is hard, y’all. I firmly believe that the Bible is meant to be the guide book for everything in life. But guess what? Other than dishing out discipline and leaving them an inheritance, it doesn’t give many specifics when it comes to bringing up little humans. Wouldn’t you just love to know how Noah convinced his kids to get on the ark? We know they were there. But seriously… just getting my kids in the car for church is like herding cats. Or how God, knowing the pain and suffering Jesus would endure, didn’t interfere?

Because I already know that someone is going to comment with, “What about Proverbs 22:6?” I’d like to point out a few things about that verse. 1) It says, “Raise a child in the way they should go and WHEN THEY ARE OLD they will not depart from it. It doesn’t say a dang thing about when they’re young and stupid, and have an underdeveloped frontal lobe, and the inability to make rational decisions. 2) It’s REALLY vague. The writer makes the assumption that every reader actually knows “the way they should go”. Hello?? Have you met the human race? NONE of us have “the way” all figured out. 3) The very next verse says, “The rich rule over the poor and the borrower is slave to the lender.” So maybe, just maybe, that verse is actually referring to teaching our kids to work hard and stay out of debt.

Although it’s hard to find many intimate conversations or outtakes between parents and children in scripture, I have found one thing that is always consistent: when children are sick, struggling, or even dead, moms and dads always seek and cling to God on their children’s behalf. Biblical parents had crazy faith, y’all.

I believe that the only two tools our enemy needs to keep us from being in intimate relationship with God are isolation and distraction. Unfortunately, I think we’re living in a time when everyone is more isolated and distracted than at any other time in history. I’m pretty sure that my need for my laptop and phone have made my faith look ridiculous when compared to the mom in 2 Kings who literally held onto the feet of the prophet Elisha until he came back to her house to raise her son from the dead. I want that kind of faith.

Hebrews 11:1 Faith shows the reality of what we hope for; it is the evidence of things we cannot see.

Possibly the most detailed account of parenting in scripture isn’t something that actually happened. It’s a parable (a simple story used by Jesus to illustrate a spiritual lesson) about a prodigal son. I love the story for many reasons. First off, I’ve been a prodigal child. I’ve run from God, made some pretty awful choices, squandered things He’s given me, and come crawling back begging for grace. Every. Single. Time… God has wrapped his arms around me, celebrated me, and given me waaaaay more love and grace than I could ever possibly deserve. I also love it because the father in the story was there waiting and prepared to celebrate the son upon his return. He had a ring and a robe and new shoes and a fattened calf just waiting for the celebration of his son’s return. He had faith that his son WOULD return.

In 2010 our baby girl had an MRI that showed she had scarring in her temporal lobe. To be specific, she had extra tissue on her right hippocampus and right temporal horn. In that first year that she was ours she would frequently freeze. We, along with her pediatrician, had suspected that she was having seizures so we saw a neurologist that ordered the MRI and two EEGs. The first EEG showed some abnormal activity, but nothing significant. The second EEG also showed some slow/abnormal activity, but nothing significant. The freezing stopped and we just assumed it had been caused by her brain trying to process a whole new world of information.

Fast forward to two weeks ago… she climbed in bed next to me one morning and in the middle of rubbing my face and asking if she could have cake, she got a look of terror on her face, screamed, began smacking her lips and swallowing, and then couldn’t form words. It took two or three minutes for her to be able to speak. A few hours later, it happened again. The next day we saw it happen two more times. The day after that, it happened four times in three hours. On the third day I started recording what we were witnessing and sent it to her doctor. While waiting to hear from her doctor, Dr. Google quickly told me what is happening looks like temporal lobe seizures. Last week an EEG showed bilateral seizure activity in her temporal lobe. We’re still waiting to get in with a pediatric neurologist for an MRI to see if there is any change from what the 2010 MRI showed, which means she is not yet on anti-seizure medication. She’s still having several seizures every day and her mental and verbal processing is definitely “off”.

Let me tell you something. Watching your child go from doing complicated math to not being able to form words in a matter of seconds is NOT fun. It’s realllly hard to choose faith in those few minutes when I can’t reach her. It’s also realllly hard to choose faith in the moments when I can’t reach my prodigal.

But then I remember…. we’ve been passed over. This house and this family are covered by the blood and God ALWAYS fulfills His promises!

When she is old she will NOT depart from the way she was brought up…

Jesus was wounded so that she IS healed…

It only takes faith as small as a mustard seed to move mountains…

I hope you experience all that Resurrection Sunday has to offer. May your dreams be resurrected. May your faith be resurrected. May your joy. and hope, and relationships, and all the goodness that this world tries to steal be RESURRECTED. And may all the yuck pass you over.

If you’ve actually read all the way to the bottom, thank you. I forget that I even have this blog and I do appreciate those who haven’t given up on me as a writer.