Little Things

I picked up the boys after school today and Jackson couldn't wait to get into his bookbag. He quickly retrieved a candy cane and began to devour it. I asked him, "Jackson who gave you that candy cane?" "Mrs. Fulk" was his quick (and no doubt accurate response). Little things like that inflate my hope. He's meaningfully answering questions about what happened at school which for him is a big step!

Tonight, he also attended the basketball end of season "party". He has been attending some practices and the home games for the 6th grade team. This has been with the help of Micheal, an incredible teenager who supports him and shoots hoops with him. Tonight, he and Micheal walked into the building for the team celebration, and I watched my anxious son be soothed by this too cool young man; so naturally and effortlessly. Within a few minutes, I texted Micheal to be sure all was well--his simple response, "Yep, he's eating pizza and ice cream". I was moved to tears as I saw his gentle and simple interactions with my son. I thanked God (& Michaels mother) for this gift, this little thing that means so much to me. I wonder again about the place God has put me in and am ever so thankful for it.

12+ Days of Christmas

This year, not unlike years in the past, Jackson has selected an obscure set of stuffed animals for Christmas (remember the Pirate Big Bird post?). This time, its a set of Winnie the Pooh characters he found on Ebay. Winnie, Piglet, Tigger and Eeyore are decked out in rain gear and are very anxious to be added to Jackson's ridiculous collection of stuffed animals.

Jack is having a tough time with the waiting. Time is pretty abstract for him and when he gets this anxious the calendar means little. He had trouble falling asleep last night and was up early this morning asking anxiously, "Mommy, get up. Presents?" Well....we have another 2 weeks until Santa comes; and it's so hard for him to comprehend. "Be good" becomes vague and difficult to attain for him.

This afternoon, he looked again at the calendar (I stamped a green Christmas tree on the 25th) and began his litany: "Santa bring you raincoat pooh, raincoat tigger, raincoat piglet and raincoat eeyore". I honestly ignored him and hoped he would somehow, someway be distracted from this obsession. (He was eventually--giving up to watch YouTube). Later, as I'm at the fridge getting out the chicken for dinner I see it: All over the month of December, in intentionally formed letters:
RkOP Kpa rkOTcKrrkpoo

Translation (in case you need it):
raincoat pooh
raincoat tigger

I got lost somewhere in the middle there, but am confident of the message he was trying to convey. And what a wonder of Christmas it is for this child to be conveying a message in print; so intently, so purposefully. It's gift enough for me to tolerate the next two weeks of obsessing about when Santa is coming and exactly what Santa is expected to bring. So, when I'm frustrated beyond words, I'm going to look at that calendar and cherish the message there.

For those of you who might be wondering, yes, Santa has 3 of the 4 characters in hand, and we're confident the last one will arrive well ahead of the big day.

Wonders Never Cease

After the Great Halloween Disappointment, one would think I'd lay low today...but we're trying to get Jackson more involved in church youth group. We've been to a few functions and gatherings (remember the prayer service?). Tonight we went for some spooky fun, thinking, like usual if we need to make a fast escape everyone would understand.
When we first got there, they were reviewing the sign-up sheets for upcoming activities. One of them was an evening of shopping and cosmic bowling at Crazy Pins. When Jax heard about this he asked, "Can I go?" I told him we would sign him up. A few minutes later, he asked Wendy, "Can I go?" How exciting to have him aware and commenting appropriately.

Later, the kids were participating in a few activities related to Halloween. I was unsure how this would go, a bunch of kids, in the dark, random noises; basically a recipe for disaster for Jackson. Way too much unpredictability.

Wouldn't you know it? My son (who just yesterday had the meltdown of all meltdowns) got in line behind the kids and followed the group. He participated in the "ghost story" played like telephone--tolerated being sprayed with a squirt gun by Dr. E.B. and even wore a blindfold for the cauldron activity. Through out the night he was socially referencing his peers and once again, they accepted and included him. When the organized activities were over, he got his snacks and sat down. Then commented on the snacks: "Jackson's eating jello. The eyeball is a donut. Jackson is eating chips."

God must have known I needed tonight. Maybe, just maybe, Jax needed it too. He really enjoyed being with the kids and didn't want to leave until he was sure everyone else would be leaving. He was happy, relaxed and basically just enjoyed being there. Thanks be to God!

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.