Archive for September, 2013

The Details

Do you love someone with autism? I do. I love several people with autism actually.

I recently had the opportunity to spend some time with one of my friends who has autism. He is a delight. He’s smart as a whip and says every bit of his always-thinking thoughts out loud. I learned a lot while I was hanging out with him while I listened to the rapid-fire things he was saying to me…and the things he was saying to no one in particular.

In very rapid succession, I learned the following 10 facts from my friend:

#10- It is important to have 100% of the car in the garage before shutting the door. No other % will do. Check the percent.

#9- I have a 9-second garage door. (Meaning that it takes 9 seconds for my garage door to close.)

#8- It is 533ft above sea level in my dining room.

#7- The bathtub in the kids’ bathroom is a hexagon — how could I not have noticed that before? It’s a hexagon. It has 6 sides. It’s not a honeycomb shape hexagon, but it’s a hexagon alright.

#6- It’s best to eat your cheeseburger top bun first, bottom bun next, and patty last.

#5- It’s a good idea to wait and watch the fan blades come to a complete stop when you turn the fan off.

#4- The climbing platform in my backyard is approximately 9 feet tall.

#3- The train that we waited on was traveling at probably 45 miles per hour.  And it had 5 cars.

#2- One billion grains of sand stored in plastic water bottles weighs about 20lbs.

And the #1 thing I learned from my friend: Stop! Notice the details! When I rush through life doing my thing, I miss a lot of details. Slow down enough to take the time to wait for a door to close completely before moving on, or watch for a fan to come to a complete stop. Notice the street signs — and read the good ones out loud just because. When you enter a room for the first time, stop and take it in — notice the shapes and colors. It’s impossible to notice the details if I’m going 100 mph doing my thing.

Remember the saying “Stop and smell the roses?” It’s valid. Stop and notice.

It’s all in the details….

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There is Grace

I am not a yeller. It’s just not who I am.

I don’t yell at my husband. I don’t yell at my kids. I don’t yell at my friends. I’m not saying I’m a better person than those who yell, I’m just saying that I don’t happen to be a yeller.

But every now and then, a yell creeps in and comes barreling out of my mouth, surprising me and everyone around me. It’s not pretty. I’m nearly always instantly ashamed.

It happened just a few weeks ago. Zippy was having one of his typical mornings while I was frantically trying to finish packing for church camp.

And there you have the key ingredients of the moment: a child whose meds haven’t kicked in yet, that same child whose feelings of excitement and anxiety about leaving real soon for camp perhaps added to his overall mess of a morning, and a stressed out mama who had procrastinated getting her stuff done who was pretty stressed at this point.

For the uninitiated, the above ingredients rarely end up pretty.

I had tried to be patient with 12-year-old Zippy. I had already asked him several times to chill out. I was really working to finish up. He had been pretty constantly causing me to get off task and requiring me to have conversations that I just didn’t feel like having at the moment. Neither one of us were aware that my fuse had grown ever so short in the hectic moments of the morning.

And then the proverbial straw that broke the camels back. Both unaware of the disaster approaching, we both continued on with our separate agendas. And he swirled and twirled by me and flicked my wet head of hair.

And BOOM! Mom, the ticking time bomb exploded!

Mom jumped to her feet, let out a bit of a growl if I remember correctly, and yelled at Zippy. I believe I told him to LEAVE ME ALONE!!

Yeah. Not my best moment. The mom – the adult—telling the happens-to-really-be-needing-his-mom child to LEAVE HER ALONE. Yikes.

I think I sent Zippy to his room, and I went quickly to mine. I took some deep breaths, actually said, “Wow…”outloud, and then returned to the living room, admitted to anyone who was watching that that was really ugly and surprising, and attempted to finish up my work.

Hours later when we were almost at church to load up and drive to camp, Zippy apologized for the morning. I turned off the radio, accepted his apology, and gave him mine. I apologized for yelling at him and admitted that it’s never okay for me to talk to him like that.

Surprisingly, he said he hadn’t even noticed that I had yelled at him. Odd, actually. Or maybe it was just the sudden movement and combustion of my jumping to my feet and growling just before the yell. Not sure. But he said he didn’t notice. And he forgave me.

But the words that broke my heart: “I didn’t mean to annoy you. I just wanted to touch your hair.”

And then he repeated it to make sure it was heard: “I didn’t mean to annoy you, Mom. I just wanted to touch your hair.”

Since he was an infant, he has played with my hair at times. I’ve (nearly) always loved it and cherished those touches, knowing that someday he isn’t going to want to play with Mom’s hair. And here, at a time when he was anxious about going to camp and needed to touch Mama’s hair, Mom freaked out on him and told him to go away. Ugh.

As I fought tears (since tears which blur the vision aren’t ideal for driving), I wondered how in the world his touching my hair could have been so bad that I felt compelled to jump up, growl, and yell at him.

Another moment out of many that I’m reminded that I’m far from perfect. I pray that I’m the mom that my kids need. I pray that I’m not screwing them up for good. I pray that when they think of their childhood they don’t remember an impatient, busy mom.

And I’m reminded how much I’m in need of God’s grace. There is forgiveness. There is a fresh start every morning … or a fresh start right in the middle of the morning if that’s what I need.

And I’m so grateful that Zippy forgives me and loves me all the way to infinity and beyond.

Hear me!

There are a few rules when you use a wheelchair –safety rules that are important.

  • Always buckle up when you get in.
  • Always lock the brakes before you get out of the chair.

Ok, so I’m thinking there are probably more than just those two, but those are the main ones for Chloe really. And they are the important ones for this blog post.

Recently at church camp, Chloe and I were headed to the cafeteria for dinner. Chloe got in her wheelchair in our room, grabbed her ipad, and was ready to go.

The threshold in our room was not the best example of an accessible threshold, but usually with a handful of tries, I could attempt to finally get enough umph to heft Chloe’s chair over it.

So as we left our room, I gave Chloe’s wheelchair a shove, attempting to clear the threshold. Unfortunately, one of the back wheels got hung up on the threshold bringing the chair to an abrupt and sudden stop. More unfortunately, Chloe , who had forgotten to buckle up, went tumbling forward onto the sidewalk … well, except for her right leg which got stuck on the footplate of her chair. She sorta crashed onto her knee right there on the sidewalk.

Let me assure you that it sounds more dramatic than it actually was. I mean, I can guarantee you that any onlooker who witnessed a child go flying out of a wheelchair would probably be quite concerned, gasp, and feel terrible panic. But in reality it really wasn’t any worse than if a typical kid had tripped on the threshold and skinned her knee. So, really, don’t be overly concerned here ….

Anyway, once we got her foot unstuck, she finished tumbling to the sidewalk. In one quick motion she was on her bottom, grabbed her ipad, and opened an app. It was an app with a collection of social stories. She — quick as lightning– opened up a social story about a boy and scanned to the page she was interested in. She pointed to it, showing it to me.

“I fell down,” the page said. And the picture, sure enough, showed a little boy who had fallen right on his belly in the grass – sprawled there very much like I had just seen Chloe do.

Ahhh, I see. She needed the social story to help her talk about and process what just happened to her. Clever.

She went to the next page, showed it to me, and rubbed her knee. The page said, “I hurt my knee.” Wow. This social story (which, by the way … where did it even come from??) was very much the same situation that Chloe just found herself in. So glad she found a little boy who could relate.

Then she showed me the next page and waited on me to read it out loud. It read, “I feel sad.” Once the words came out of my mouth, she began to wail and shed real-life tears and rub her knee.

She waited to cry until she had said to me, “I fell down. I hurt my knee. I feel sad.”

The tears flowed over her scraped knee and shin. She was really playing it up now. She was able to relate, communicate, be heard, and express her emotion. And now she was just a-blubberin’on the sidewalk.

My girl is fascinating. She amazes me. She’s smart. She’s clever. She’s resourceful.

And she really never misses a beat.

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Not Knowing …

Chloe, my 11-year-old daughter does not have a diagnosis. Since her birth, she’s been tested for everything under the sun. But all tests come back “Normal.” But my Chloe is not normal.

She has a normal MRI of the brain and spine. Her chromosomes all come back as normal also. Her blood work usually comes back normal and shows nothing. She has the doctors baffled, really.

For years her neurologist and her geneticist passed her back and forth, unwilling to “own” her. The neurologist would swear it must be genetic. The geneticist would declare it must be neurological. Finally they agreed that what she has is genetic — a syndrome of some sort — but they don’t have a clue what.

It used to really bother me that she didn’t have a diagnosis. I would spend hours and hours and hours researching on the internet, trying to find the answer. Somehow, putting a label on my child would give me peace or finality, I guess.

But the Lord ended up giving me a peace about it, and I was set free from having to figure out the mystery of Chloe’s diagnosis. At times it would be great to know the diagnosis so I could more closely relate to folks in the disability community who can list off their child’s labels. Other times, it would surely help as we make decisions for treatment. Some rare times, the thought of life-expectancy comes into my mind … does Chloe’s syndrome include a shortened lifespan?

But really for the most part, her lack of diagnosis doesn’t bother me. She’s Chloe. She’s perfect. And she’s mine.

But lately (as has sometimes happened in the past) a fear of the unknown has crept back up into my mind. I think I’ve mentioned here that Chloe’s ability to walk has greatly diminished in the last year. It has gotten so bad that she crawls around the house now since walking is so difficult. With the regression of her walking has also come the regression of her feeding. She prefers to only drink her Pediasure milk every meal. I’ve been successful most days to get her to eat something, whether it’s pudding, baby cereal, or a squeeze fruit packet. But if it were up to her every time, she’d just drink milk.

Doctors aren’t sure why she’s lost so much of her skill for walking. No one is sure why she has regressed in her eating. Their best guess for walking is that she’s grown so much that her muscles haven’t been able to catch up. If that’s the case, then there is hope for her regaining that skill. However, the doctors also mention apologetically that the truth is we don’t know what we’re dealing with. They always wonder if perhaps this is the next step in the progression of her unknown syndrome. While she’s never given us or doctors any reason to think her syndrome is progressive, the truth is we just don’t know. So when we go through times like we’re in right now, there is some fear.

While I have complete peace in who Chloe is and that God’s purposes for her are and will be fulfilled, I also have to admit that I just don’t know. I don’t know what the future holds for her. But you know what? I don’t know what the future holds for Elliot or Zippy either. In fact, none of us are promised tomorrow, are we?

I am a big believer in not owning anything until you’re sure it’s yours. You know what I mean? You find a lump in your breast and you’re sure it’s cancer and you’re filled with all kinds of fear …. No. That’s not how I do things. I don’t get worried about cancer until I know it’s mine. And I don’t worry about Chloe’s syndrome progression until I know it’s hers to deal with.

I know that her regression in walking is frustrating and limiting for her. Therefore, I have her in physical therapy 2 times a week. I know that if she regresses much more on her eating, she will lose the ability to eat orally, and I don’t want that to happen so we are doing tests and encouraging her to eat foods. I know we have to own those things so I’m dealing with them as they come.

I tell you all of this not to worry you (remember: don’t own it until you know it’s yours to own!) but so that you can pray for Chloe. And so that you can know what’s in our minds and hearts. I try to be fair and share the goods and the bads here on my blog. So here is some fear and some unknowns and some vulnerability.

It’s all in the unknowing…

And for the rest of the unknown … I give it to God. It’s His anyway, isn’t it? He loves Chloe way more than I do so His hands are good ones to place her in everyday. I truly believe that.

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