Like I said, you never know what you're gonna get

Halloween: a treasured child-centered holiday, right? Who doesn't have fabulous memories of trick-or-treating, treasured costumes and the onslaught of candy?

I vividly remember the first Halloween Jackson could really participate and "get it". He had just turned 2 and was a big fan of Toy Story, so I spent $40 on the costume at the Disney store and waited with anticipation of our first "real" night of trick-or-treating.

We have these awful photos of that night: Jackson miserable in his costume, red eyed and red faced with no clue what could possibly be fun about this scene. He slept through Halloween the year he was 3, and tolerated it a bit more the year he was 4. I quit hoping for the typical Halloween experience and became appreciative of the little things: at least he'll wear a costume.

Last year, he had a great time--finally finding the pure joy in the holiday. Likely, following his brother's cue, but also excited to be Spider man (again, I shamelessly spent $40 on a costume to his liking, hoping beyond hope he'd enjoy it). We walked all through town last year for over and hour. I can't explain to you how incredible it was; how normal it felt.

This year, sadly, the stars were not aligned in our favor. During a typical Saturday shopping with Dad, Jax lost one of his coveted stuffed animals. Thus, began our quest to find (or replace) the lost toy. His anxiety was off the charts. He was scripting things:
"Oh, I'm a lost toy"
"Dad, do you know where Widget is?
"Mom, I lost Widget"
"I can't find Widget"
"Oh, I'm so sad"
It got progressively worse.
Trick-or-treating was out of the question.

In the midst of this is my 6 year old, who is wearing his pirate costume and just wants to trick or treat. Then, when he finally gets to go, most of the magic of the night is lost. There isn't anyone to share the excitement with; no one to run from door to door. A cloud of concern for his brother, "mom if dad finds Widget will Jax come with me?"

Is it not enough that autism takes from me? Is it not enough that Jackson is trapped? Captive to the demons of autism? No, clearly, his brother is another casualty of this ugly, hateful disease.

In the end, we found the "lost" toy, but we cannot get back the wonder, and joy that should have been ours tonight. I cannot help but be angry about it. I'm angry at myself too, for letting my guard down. For expecting another year of "normal". That maybe what made me the most angry...that I let autism get the best of me--again.

"Take Pictures and Be Proud"

Tonight was Jackson's first middle school music program. He's playing the drums in band and sings in the choir. Initially, when planning for tonight's program, we decided he would do fine singing, but we were not sure about how he'd do playing drums with a concert band, for an audience.
Earlier today, I got an e-mail from Mrs. L. who shared that she and the band director thought Jack would do fine in the program and planned for him to participate using a drum covered with a practice pad. Nervously, I agreed, hoping beyond hope that he was ready for this step.
I dressed him in his music shirt, khaki pants and dark shoes, then prayed. Prayed he was ready for this, prayed he enjoyed it, prayed he wouldn't "stim" on stage. Then I watched him head into the band room.
Later, as the kids entered the stage, I thanked the band director for his inclusive attitude and general acceptance. He replied, "It's no big deal, just take pictures and be proud." Well, I did and I was. Jack really seemed to enjoy participating. He was referencing his peers drumming beside him and he smiled a big smile. [So did I].

He left the stage and waited with the other choir members for their turn on stage after the 7th & 8th grade band. When he returned, he stepped up on the risers, and stood beside JB. [There is a special place in heaven for this kid, who knows just how to gently keep Jax in line]. The music started and Jackson sang the two songs, then exited the stage without incident.

I doubt there was a parent in the room as proud as Dan & I were tonight. Proud of what our son was able to accomplish in a supportive environment with encouraging adults and accepting peers. I don't know how I could be more proud....

Brothers

Jack and Cal share a bedroom. They have since Cal was born really, Jackson was so concerned with his baby brother, wanted to be around him--kind of like a guardian angel. He never bothered Cal as a baby, just wanted to be near him. So, for a while, Jack slept in a toddler bed in the nursery, then we moved the toddler bed into the bedroom and that's where they are today. We won't tell Cal this, but if he wanted his own room, we'd probably consider it. For now though, its working for us.

Last night, the boys constructed a "bridge" between their two loft beds and were launching Batman and the Hulk across it. At one point, we went in to check on them and found Jack in Cal's bed and Cal in Jackson's bed. They were giggling and having way to much fun for a school night. Dan asked "what's going on?" Cal responded, "Dad, we're just having a little fun." I couldn't be mad. Isn't this what brothers do? Rough house at bedtime? Build bridges together? I'm smiling inside...

Tonight, they're running around the house, chasing each other. Laughing about a cowboy hat and having their own brand of fun. Yes, it's bedtime and they should be in bed, but this is a Kodak moment. A piece of time I don't want to forget. So I'm letting them run rampant while I type this...then I'll attempt to put them to bed, where I'm sure they'll continue cavorting. (And I'll continue to smile inside).

Another Year Older

Jackson is twelve today. This picture is of him with Grandpa Bill (who shares his birthday) taken before we suspected anything could be wrong. (Doesn't he look happy?)

Of course, I'm reflecting on his life today. Moms do that kind of thing I guess. I found myself watching the clock and thinking back to the long night and day at the hospital. Remembering the miracle of his birth; we waited so long to be a family.

This is my grown up 12 year old boy--a photo he recently took of himself.

Twelve years of blessings wrapped up in a boy. Joys and heartaches, triumphs and sorrows, dreams and nightmares. What a journey through childhood we've had; not at all what we expected but rewarding in its own way.

I still can't help but wonder what my boy would be like if he weren't trapped inside the cage of autism. Some of the same things we wondered when he was born:

Would he be kind? Smart? Quiet?

Would he be play sports?

Will he be happy? Successful?

Of course I think he's smart and kind. I probably wouldn't use "quiet" to describe him, though others might. I know he enjoys being part of a team, even if his athletic skills are lacking. I definitely would have to say he's successful. He's found a way to reach out, to touch others without words. He's navigating the labyrinth of autism and still comes out smiling.

I don't know what his future holds now, any better than I did that day in the hospital 12 years ago. I do know that I will continue to support and encourage him to fulfill God's purpose for his life. Then, pray, pray, pray that I have the stamina to see him through.

Thinking Differently

I attended "autism team" training. (Which is another story in itself). I actually was dreading the time away from family and frustrated by the inconvenience of taking the time off. The first speaker was dynamic and interesting, but really didn't introduce me to anything new. We've been working through the maze of autism for nearly 8 years now and I thought I was aware of everything out there: diet, meds, therapies, even several fringe approaches. So Friday morning when I listened to a speaker talk about movement differences and autism, I was curious.

The more she talked and presented, the more it all made sense for me. In a nutshell, autism affects the whole body. It's a central nervous system disorder and considering there are nerves everywhere in the body, well, there you go. And this makes sense for Jackson: he doesn't have a "fast" gear. Even when he's in a hurry, his movement aren't fluid.

It was just fascinating to learn something new that was so applicable. Just proof that there is always another piece to this puzzle.

Youth Group and the Prayer Service

Jackson has been participating in youth activities at church. The youth group is for kids in grades 6 to 12 and has about 20 active participants. Last Sunday we took him to Epworth Forest to participate in the Illuminate Youth Rally. He seemed to enjoy the music and obstacle course. He was overly concerned with "where" everyone was. He kept tabs on the kids in the group; CUMC won't leave a kid behind as long as Jackson is around. Which is truly remarkable when you consider that so often people living with autism are not at all "other oriented".

Tonight we went to Youth group for an informal meeting then to participate in the Prayer service. The kids are so kind and accepting of Jackson. When he walked into fellowship hall, many of them greeted him. A couple of the boys helped him get the pinball game started. Then the group headed to the prayer service. The tone of the service was quiet, serene, introspective. None of these are adjectives I would use to describe my son...but I am a firm believer in exposing him; stretching him a bit further all the time. It was hard work for him to sit quietly and attend (quite honestly it was hard for all the youth to be attentive). At one point, when the sanctuary was quiet and Jackson was being silly he said, "Eat more chicken" to which all the youth got a chuckle. Thank God (literally) our congregation is understanding and accepting. (I was still mortified). At another point in this service, the participants were called to write down what they were thankful for and then go up and share them in an offering plate near the altar. I asked Jackson what he was thankful for and helped him spell "friends" then he got up to put his note in the offering plate. I walked with him, attempting to hold his hand, but he shook my hand off. He walked up and put his gratitude in the plate--then turned the opposite way to walk back. I was choking back tears as I re-directed his steps. You see, I am grateful for my son. I am grateful for a church family that supports his spiritual growth. I am grateful to the Lord for continuing to offer me opportunities to grow in my faith, and find strength in Him.

Tonight, Jackson touched the heart of many. Thanks be to God.

It's in there

Today Jackson said, "I watch Rugrats."
I asked, "when did you watch Rugrats?"
He responded: "at the Y."
me: "Yes, you did watch Rugrats at the Y. Did you like it?"
J: "yeah"

It was over 4 years ago, but he did watch the Rugrats at the Y pretty regularly. I had to laugh out loud at his comment, as I'm amazed at its relevance.

It strikes me that so much is trapped inside his mind, as he struggles to find a way to make sense of it; to put it all in order. We get random comments like this from time to time, that seem to make sense.

A few years back it was "Meagan likes popcorn" a throw back to his time in pre-school with Meagan, who did indeed like popcorn.

It's in there...just waiting to come out...

I watched just bits of the Dateline piece on autism and vaccines. At the risk of sounding petty and self-centered, I admit that all this research ("being on the verge great things coming out of the recent research in the next couple of years") means so very little to me. Will it ever help recover my son? Nothing can give back to us the things we have lost to autism. Nothing. Even with a "cure" his life has been so radically different from "normal". Generally, I try not to focus on this. Try to look on the "bright side" and enjoy and celebrate my son for who and what he is. There are times though, that emotions are raw and I'm left feeling frustrated.

More on vaccines, autism and how it relates to Jackson another day.