This Little Light

I’ve been reading the latest book from Temple Grandin, Ph.D., The Way I See It. In case you’ve never heard of her, she’s a 63-year-old Professor of Animal Science at Colorado State University as well as an engineer, an inventor, an author and a public speaker. And she’s autistic. She’s been called “the voice of autism.” It’s very enlightening to read her books because she is able to express in words what autism looks and feels like from the inside. She also makes me constantly look at how I interact with Caleb. For example, I was convicted when I read,

Far too often we adults make gross assumptions about the capabilities of people with [autistic spectrum disorder] based on their label, especially with children who are nonverbal or have limited verbal abilities. NEVER let a label lower your reasonable expectations of a child and that child’s capacity for learning. … You rob the child of his potential, and his future. All because of a label?

I wanted to cry after reading that because I was guilty of it. Too many times I’ve changed the rules and lowered the bar for Caleb (e.g., not requiring him to clean up his toys or to throw away his trash, making it acceptable for him to be unkind, changing or avoiding consequences which should follow his actions). It’s not easy to treat him the same even though he’s different. But I began to do it, and you know what happened? The same thing that happens when you don’t lower the bar of reasonable expectations for a typical child: he met and exceeded every one. He’s becoming a different person and it’s changing the dynamics of our family!

The most significant way Dr. Grandin has completely blown my mind is by challenging the notion autism is a disability that needs a cure. When asked in an interview about research to prevent autism, she said

I get concerned about that because if we totally get rid of the genetics that cause autism, then we’d be getting rid of a lot of talented and gifted people, like Einstein. … After all, the really social people are not the people who make computers, who make power plants, who make big hotel buildings like this one. The social people are too busy socializing.

She goes on to say in an ideal world we would be able to get rid of what causes severe impairment, but should preserve some of the genetics which cause autism.    Honestly, when I read that I thought Only someone autistic could make such a precocious statement. Amazing! Now more than ever I’m looking differently at my son. I will continue to pray and to do whatever is in my power so he can live a full life; however, I’m no longer trying to figure out how he needs to change to do so. He is wonderful! And as he moves from glory to glory, I will love him exactly how he is!

~ ~ ~ ~ ~

Normally I’d never publicize a video containing such pitchy singing on my part, but this isn’t about me! I dedicate this video to April Braun and all the Reign Forest volunteers at Freedom House Church. This is why you do what you do!

No Kiddin’

So I saw the orthopedic doctor yesterday. As nonchalantly as only a professional who’s performed the procedure 700+ times could do so, he explained what he wants to do to replace my torn ACL. He’ll get rid of the “shreds” of my original ACL, then surgically remove part of my hamstring muscle, drill holes in the bones in my knee, thread the hamstring muscle through the holes and then secure it all with titanium pins.  I start physical therapy next week to strengthen my other knee muscles in preparation for the procedure. This is a major surgery that will happen in late April. And all from a child’s birthday party. It’s just not fair.

That is all I have to say about that.

You Gotta Be Kiddin’ Me!

Ok I must admit when I went for the MRI I expected to be told nothing was seriously wrong. I mean, it wasn’t a sports injury! I just stretched a bit too far and hyperextended my knee. No biggie. I figured perhaps there was maybe slight damage and I’d be told to get a more serious brace and stay off my knee as much as possible. So imagine how completely rocked I was when the nurse got on the line yesterday speaking with a tone you’d use to relay a death sentence.

“Mrs. Williams? I have the results of your MRI,” she began, “It shows that your ACL is torn. Now we’re going to refer you…”

“Wait … what? … Well, is it a partial tear?” I asked.

“Hang on a minute, let me check. {long pause} It’s completely torn honey …”

Uninjured ACL

Injured ACL

 

You have GOT to be kidding me! I’m thinking as I listen to her tell me how an orthopedic doctor will be in touch to examine my options. But there it is. Turns out the “popping” sound I heard/felt at the time of my injury was not from my bones. No, it was the sound and feeling of my flesh (including blood vessels) being ripped apart! Which explains the blacking out, the nausea, the breaking out in a cold sweat, the diminishing of my hearing as my ears seemed to fill with cotton … Actually I don’t really understand the last one, but I’ll tell you what: I am more impressed with myself now than before that I finished the party on my feet! And go figure I’ve been going full speed for over a month now with only slight discomfort!

 {sigh} I don’t have time for this.

Talking Trash

I finally went to have an MRI done on my knee. You know, House is one of my favorite shows and so I’ve never thought there was much to the process other than having to remain perfectly calm and still while being entombed in a tube briefly. I guess the thing that threw me was how not brief the experience actually is. I had to lay perfectly still for about a half hour! Thankfully since my knee was the only injury to be examined I didn’t have to go completely in. In fact I was sent in feet first and only up to my thighs. And because the machine is rather loud at times (like a jack hammer) I was given headphones with smooth jazz piping in. I fell asleep.    Shocked me! Next thing I knew the tech was waking me up. I wonder is that normal. Anyway I got up, they escorted me out and that was that. I’ll hear something maybe tomorrow.

As I was driving through my neighborhood on my way home I noticed that every single house I passed had their trash and recycling put out on the curb for pick up. Now Thursday is our regular trash day, so it wasn’t completely unusual. The only thing was I knew that our regular pick up was delayed a day due to the holiday on Monday. At least I thought I knew that. But after passing house after house on my way home with trash and recycling neatly placed in front, I began to doubt myself. Even after going in the house and confirming the delayed schedule online I was still wavering. It’s just kind of hard to believe you can be the only one who is right, that not one other person knows what you know.

It could only have been the Holy Spirit who then shifted my thoughts to Noah and his ark, David and Goliath, Abraham and his covenant with God … all of these men had to be right, alone. In fact it would seem that to do anything really great for God requires the faithful to stand alone sometimes in his/her convictions. Once again God proves He wastes absolutely nothing; He can use anything to minister–even your garbage! I shared this revelation with Jadon when he got home from school. I think he understood … a little. Am I expecting too much for him to retain this nugget forever? Or at least through the years he’ll deal with negative peer pressure? You think?

Knowledge Gives Power

As I was preparing dinner Jadon was reading to me from one of his fav books, See Inside Your Body (Usborne Books, $12.99). In the section on “Breathing air” he read that smoking is bad for your lungs, and under a flap on the picture of a lung he read of how tar turns the lungs black. He looked up suddenly and asked, “Do you smoke Mommy?”

“Nope,” I replied.

“Did you ever smoke?”

“Nope. Never.”

“What about Daddy? Does he smoke?”

“Well, he did a long time ago. But he doesn’t now.”

When Hollis came into the room later, Jadon immediately confronted him. “Daddy! Did you smoke?”

“Yes,” Hollis replied, “a long time ago, before I knew Jesus.”

“Well don’t ever do it again! Smoking is bad for you, and it will make your lungs turn black! Okay, Daddy?”

Humorously I watched the teacher-become-student nod his head humbly and reply, “Yes, Sir.”

Wowwipop!

I don’t know what we did or didn’t do, but Caleb is talking like crazy! Maybe the trigger was the dosage level of chelator we hit a few weeks ago. Perhaps it’s because, in an effort to reduce Caleb’s toxin load, I stopped buying microwave popcorn bags of which he and Jadon would eat one or two a day. [See article, "The 7 Foods Experts Won't Eat"] Many theories abound; I don’t care! Earlier today he decided he wanted a lollipop. We heard him in the kitchen say to no one in particular, “Wowwipop!” (He hasn’t mastered the L sound yet.) Then he ran over to me, pulled me to my feet, led me to the pantry and opened the door. He pointed to the candy container on the top shelf and again said, “Wowwipop!”

Now beyond just him talking, the significance of all this is:

1. He had an abstract idea of something he wanted; there was no visual which prompted the desire;
2. He verbally expressed this abstract desire;
3. He reasoned how to obtain his desired treat (recalling the location, realizing he couldn’t get to it himself, soliciting my assistance); and
4. He used verbal as well as non-verbal (pointing) to direct my attention

I don’t have another memory of him ever doing something like this.

Another cool display of his increasing reasoning occurred last week when I picked him up from school. As we were leaving his teacher called his name and he turned his head toward her in response. We get that every once in a while. Then she said, “Bye-bye, Caleb,” and gave him a little wave. “Bye-bye,” he parroted, also giving a little wave. “I’ll see you tomorrow,” she said. “See you tomorrow,” he parroted again. As we walked to the car I said to him, “Wow, you are amazing.” He responded, “I am amazing!”

“I am amazing.” THAT wasn’t parroting. He translated the subject of my comment from second- to first-person form! THAT took a new level of reasoning.

This opportunity to provide him ABA therapy is coming at a perfect time. Should he continue improving in this manner, this intensive therapy can encourage him the rest of the way AND reduce regression. I’m still working to get him into the program I found. It’s quite outside the box from how the benefit traditionally works but thankfully the staff is willing to do whatever they can to make it work for us. Last week they even agreed to take on extra workload, submitting themselves to an application process to become certified providers with our insurance.

Right now Caleb is watching Jadon play games on his laptop and encouraging him with comments like “Good job!” and “You did it!”

Oh, My God…

About a month ago a friend forwarded me a video she found on CNN about a kid who was recovered from autism using ABA therapy. My response to her was as follows:

Thanks for sending this. It’s frustrating but still encouraging. Do you know how much 40 hours a week of ABA therapy would cost? Here’s an idea: One hour of therapy for Caleb was $125. You have to be rich or well insured to recover your child this way.

Fast forward weeks later to the first Monday of the new year, also Hollis’ first day of work at his new job. Now I wasn’t there, but I can almost see it in my mind. We knew part of the greatness of this company was its off-the-chain benefits package for full time employees. There was no surprise there for us how much of a blessing that is. But during orientation on that Monday as the onboarding rep was outlining the information to be found in the benefits package (or on the benefits jump drive to be more exact), he rattled off something like ”the company offers a special benefit for autism…”   As the rep attempted to continue his schpeel Hollis interrupted with something like “Whoa, whoa, whoa! Back up, please. What was that about autism?” The rep informed him briefly how six months ago the company began offering employees a special benefit for autistic dependents to receive ABA therapy. After telling Hollis how more information could be found in the package he can review on his own later, the rep continued on with his speech on 401k plans, vacation time, insurance and so on. Now I’m sure while the other new employees listened attentively to what followed, to Hollis the man must have sounded like Charlie Brown’s teacher–waa-waa waa-waa waa-waa waa!

There that rep sat talking and the other employees listening, completely oblivious to the massive implications of what was said. Oblivious to how this could change for good a certain little boy’s life and relationships with family, friends and strangers. Oblivious to how a few years ago we attempted to sell our house so we could downsize our life to be able to afford this kind of help for this beloved little boy. It absolutely baffles me how those men could have possibly sat there so calmly when a blessing the size of a mountain had just dropped on my husband and our family!

Once Hollis recovered from the blow he texted me what he’d just learned. It took my breath away. Immediately I recovered my research into ABA programs here in NC. By Friday morning I had visited my top pick. By Friday afternoon I was in love with the school, the teacher was in love with Caleb, Caleb was in love with the classroom and I was so excited my insides were shaking! So this week begins all aspects of work to make this happen.

Oh, my God…thank you, thank you, thank you so much.

This is a Test

Hollis and I set a goal on January 1 to pursue thankfulness as a lifestyle. Kind of a “resolution” for the new year and beyond. We are holding each other accountable to identify value in every situation. Well today (January 2) I had my first test of that resolve; and that damned devil hit below the belt.

I took the boys to Plaza Fiesta. It’s a pretty cool place where they have this amazing indoor jungle gym; it goes all the way up to the ceiling. It’s like a maze with many ways in and out. Jadon and Caleb love it. The minute we entered the area Caleb took off into the gym. He moved so fast I didn’t get a chance to see  where he went. So I spent a few minutes trying to locate him. He’s of age to be able to play in it unaccompanied; however, his lack of communication skills always make me more protective of him around other children who don’t understand his behavior. When I finally located him my heart and stomach sank as I witnessed a bigger kid punching him repeatedly in the gut while my baby stood there pinned in a corner crying. I frantically tried to navigate the maze to get to him and by the time I did his assailant was gone. As kids rushed by him, Caleb was just cowering in the corner with his sweatshirt partially pulled off seemingly afraid to move. When he saw me he threw himself in my arms and I comforted him until he pulled away. He then ran off again, laughing and smiling like nothing had happened. I, however, couldn’t shake it off as easily. Admittedly I was thinking if I could remember what that kid looked like I’d find a way to cross his path and trip him so that he’d fall flat on his face. Hard. I was able to shake those thoughts off fairly quickly; however, I still remained angry. I just wasn’t sure with whom. I was angry that my son could not cry out to me, could not cry out at all. I was angry he didn’t know to defend himself. Angry because he couldn’t tell me what he felt. Angry because I don’t know how that experience affected him because he can’t communicate those expressions. I thought, To heck with living a lifestyle of thankfulness; I was not at all thankful for anything about that experience! But later once I calmed down and got my emotions in check I realized the value of what happened, how God had moved quickly to impart a dire revelation to us before Hollis and I blew our worthy goal. The revelation: True thankfulness requires faith.

To live a lifestyle of thankfulness is not a goal for the weak in spirit; some situations will require a perspective beyond the flesh to discover its worthiness–like what happened with Caleb. I am not thankful for what happened to my son, nor am I thankful for the challenges he endures which make him vulnerable to such attacks. But I can see the value in God quickly arresting my perspective on thankfulness by showing me that to live it as a lifestyle won’t always be possible in my own strength. He set me straight before I could set myself up to fail. And for that I can be truly thankful.

New Year Vision

Every year Hollis and I have a meeting to lay a course for our family, and from the beginning it just seemed appropriate to have it around New Year’s Day. In seven years it has never failed that we are in complete agreement with what God has been placing on our hearts leading up to the meeting. It’s an amazing experience. Even this year when Hollis dropped a HUGE bombshell it didn’t totally blow me away, because a few days before then I had already seen a glimpse of it “as through a glass darkly.” This has happened to us many times–Hollis thinking he’s telling me something that will blow me away, only to find out I’d already received some or part of the message in my spirit before he ever spoke it. Pretty cool how God works that in a marriage.

So this year is no different. We both agree our family’s focus this year is on stewardship. Most folks felt 2009 was the year we all were forced to simplify life. But for us this is the year we feel burdened to purposefully make the most of what we have–to include our time, relationships, health, money, possessions, education, etc. As part of that we have agreed to hold each other accountable to be more thankful for what we have, to sincerely offer more prayers saying “Thank you. Amen.”

To those who use well what they are given, even more will be given, and they will have an abundance. But from those who do nothing, even what little they have will be taken away. [Matthew 25:29 NLT]

It’s All Good

Yeah my last post was just the result of lack of sleep and PMS. I’m over it. Meanwhile my head is spinning watching all the changes going on around me.

• In only 8 days it’ll be Christmas.
• In only 9 days Ashley, Drew and Devin will move out of our home for the last time, this time bound for Germany for three years.
• Our neighbors and close friends are moving in 2 days.
• My mom is moving to Charlotte some time before January 1.
• Hollis will be starting a new job at the beginning of the year.
• Jadon, Hollis and Grace will take their first hunting & fishing trip soon.

Whew! That’s a lot of coming and going in such a short season! Somehow it all makes me feel kinda tired, even though I’ll just be sitting here with no destination whatsoever.

Switching subjects, for some reason Caleb has been off-the-chain hyper these days, even without gluten. It’s got me looking now at other things in his diet that may be throwing him off. The other day as I was thinking on it, I began to think about all the times movies have portrayed Hot Pockets as the food of choice for geniuses. It’s like a stereotypical running joke in Hollywood apparently. We don’t eat Hot Pockets. In fact, thanks to Jim Gaffigan, just saying ”Hot Pockets” around here makes us giggle. But I started to think about the connection: Hot Pockets and geniuses, genius and Hot Pockets. Either way you twist it, it would seem there exists a belief there may be something in this greasy, preservative-filled convenience food that fuels intelligence. How scary is that? I mean, what if after all the effort we put into researching healthy diets, and money and effort spent to buy “organic” and “free range” and “grass-fed” foods, in the end it was really the Hot Pocket that was the answer to all our toxic whoas, the last manna from Heaven?  {{{shudder}}}