stimmers – 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!

I’m physically feeling better today. I honestly expected to have painful caffeine and sugar withdrawals for a week or so. Thus far, I have had a dull headache that seems to appear at the times of day when I’ve previously consumed large amounts of caffeine, but I’m finding that by eating a piece of fruit or a handful of nuts, it goes away. The emotional and spiritual pain is probably about the same as yesterday though.

Today I walked through some big stuff. I don’t feel free to share all the details, but I had a realization that every single obstacle that exists in my relationship with my oldest daughter is based on some of my mother-wounds that have never been dealt with. Since I lost my Mom more than five years ago, I just have to let those wounds be healed without any real conversations. Maybe that’s for the better though. I can see clearly that my Mom did the very best she could and that she made choices concerning me and my sister with nothing but the best of intentions. Without saying much more on that matter, my prayer is that my relationship with my daughter is about to reach a whole new level.

The other big lesson today came once again from the sermon on the mount. This time it was on loving people.

Matthew 5:43-48 You have heard people say, “Love your neighbors and hate your enemies.” But I tell you to love your enemies and pray for anyone who mistreats you. Then you will be acting like your Father in heaven. He makes the sun rise on both good and bad people. And he sends rain for the ones who do right and for the ones who do wrong. If you love only those people who love you, will God reward you for that? Even tax collectors love their friends. If you greet only your friends, what’s so great about that? Don’t even unbelievers do that? But you must always act like your Father in heaven.

While I take pride (yea, yea, I’m working on the pride thing too) in the fact that I truly deeply love people, I had to come to terms today with the fact that I have a much harder time loving some people than loving other people.

There have been several VERY RECENT occasions for me to pounce on people for not seeing my two little stimmers (autistic blessings) as equal to every other child on the planet. The minute someone treats one of them differently or denies them any right that a typical child would have, words like “discrimination”, “segregation”, and “isolation” jump to my mind. I’m not a huge fan of the ACLU, but when those words start running through my head I wish I had a number for their complaints hot-line on speed dial.

Today I had a big realization. It sucks to admit it, but I’ve displayed all three of those ugly and unacceptable words towards people in the VERY RECENT past. The sun rises and shines for each and every one of us. The rain falls for each and every one of us. Salvation is available for each and every one of us. His grace is available for each and every one of us. His love is available for each and every one of us. The realization of just how hard it is for me to show that kind of love and grace to some people is just painful. I’m a mess. I’m glad God doesn’t give up on me because when I think of just how often I fail to act like Him, it’s more than a little humbling. I need the kind of unfailing grace that ONLY He can give, more than I can probably even grasp.

Tomorrow’s to-do list is going to look a little different than the one from the last three days. Tomorrow I am challenging myself to greet every person I meet as if they were a close friend. I’m sure I just opened up an invitation for every nasty person in the DC metro area to cross my path. To them I say, “Bring it, Stringbean! Show me what you got!”