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.

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.

Firstborn Son and random signs from God

Sunday in church, the Bible passage referenced sacrificing the firstborn son. The message was on following God and the passage begged, "what would you do for your Lord?" It had a completely different meaning for me. Suddenly, I felt the pain of sacrificing my first born and God's gift to me had greater meaning than ever before. How could He endure? How did He manage to see the Gift through?

I've sacrificed my firstborn son to autism. I didn't willingly give him [nor would I ever choose to] yet, I'm living with the consequences every day. Autism is like an invisible prison for him, locked inside his own world, at times unable to communicate his basic needs. Rarely able to communicate his frustrations or joys. Everyday tasks others take for granted require much more effort and focus for him. I feel like so much has been taken from him, from me.

As I ponder this sacrifice, I am reminded what I've gained. The perspective, patience, empathy and basic acceptance that I might not otherwise have. And then, I wonder what has my baby gained? How has this been a gift to him?

God gently reminds me: Jackson's life is full of purpose and meaning. Jackson's life story and journey isn't that different from any other child of God's. I need those signs from God. The gentle reminders to carry on. The sometimes quiet voice reminding me that God's plan is perfect, though mysterious. The calming voice reminding me there are burdens greater than mine...

Look How Far We've Come

Jackson has had band lessons all week. He's starting middle school and gets the opportunity to play drums in the band. I'm ever so grateful for Tyler, a very cool kid, who is willing to take Jack every day and provide the support he needs to be successful.

Like most things with Jackson, I wasn't sure how this was going to go. I lost sleep over how he would do and was worried we hadn't prepared the band director for just what to expect. I prepped Tyler, explaining that it was OK with me if Jax didn't make it the entire hour, "do what your comfortable with" I told him and I prayed. I hoped that Jackson could make it through at least part of the lessons each day. The first day, he stayed for the entire hour and Tyler reported he did "fine". The second day I expected him to return home early and that he would lose interest. Instead, when Tyler dropped him off (after staying with the lesson for the entire hour) Jackson cried and wanted Tyler to come back. He anxiously asked repeatedly yesterday about Tyler and band.

Tyler just picked up Jackson for day 3. Jackson couldn't get out the door fast enough, and then as I'm at the car door reminding him to put on his seat belt, he literally slammed the door in my face, as if to say, "mom, I can do this, you are not cool!"

I truly feel like this is God's gentle reminder: You've done right by your son; he is My child too, and he will succeed. It chokes me up. I want to make the best decisions for him. I want him to succeed. I refuse to give up on him and lower the bar. I refuse to remove the support system so strongly rooted in this community. Given the opportunity, Jackson rises to the occasion and shines.

"why"...because I'll forget ;)

Why questions are the most difficult for Jackson to answer. He's gotten really good at "what", is decent at "where", we're working on "when"; but "how" and "why" are so abstract and difficult for him...
Last month he answered his first why question. The other day I couldn't even remember the answer, so I'm putting here forever...
We were at my grandparents hanging out with them, (my uncle had just passed away). Jackson loves their house. They have all the cool things he likes: lots of space to run, a long paved driveway to ride his bike or scooter, a barn full of tools, a swing, the list goes on. He'd been outside playing, riding his scooter and he came in and asked to go to the barn. It went something like this:

J: "barn?"
Me: "what do you want?"
J: " I want to go to the barn please"
Me: "Jackson why do you want to go to the barn" [of course I wasn't expecting an appropriate answer]
J: "to ride the tractor"
Me: [to my grandparents] "That's the first time he's ever answered a why question, I'm taking him to the barn"

So, we went to the barn so he could "ride the tractor".
My life is filled with simple joys so many others take for granted...

Like a Box of Chocolates...

...the thing about autism is, you never know what you're gonna get; which in many ways is incredibly frustrating. Every once in a while though, there is a curve ball you didn't see coming and you connect and hit a grand slam. We just had a weekend like that.

My youngest sister got married in a gorgeous outdoor ceremony. Jackson did great sitting still, paying attention to the vows and patiently watching the wedding. During the reception, he enjoyed the music and company of others (while playing with the "busy toys" Aunty Tricia provided for all the kids). Of course, he was obsessed with when we would be heading back to the hotel to swim and asked at least 300 times about it, but somehow when it's all said and done, my pride in his overall ability to assimilate super cedes his OCD regarding the hotel. The wedding victory, though great isn't his grand slam.

After spending the night in Indy we headed south to Holiday World for a couple of days of fun at the amusement park. This setting can be like the perfect storm for Jackson: hundreds of people, various noises, water, rides, you get the picture. The first day he had a blast in the wave pool and on the 'lazy river', we decided as a family to push the envelope and have him try the giant water slide. This particular slide was 10 lines wide and similar to the giant slides at amusement parks you ride down on a potato sack. It was short and fast so we decided a good starter; for both boys. As we waited our turn to go down, I anticipated a meltdown. There wasn't one. When we got to the platform at the top of the slide, I anticipated a refusal to go down and imagined us walking down the steps we just waited on.

We didn't walk down the steps. Jax rode the giant slide on his mat smiling and laughing.

The second day in the park we waited for a couple of different slides for almost an hour each, at Jax insistence. He wanted to ride the BIG THRILL slides. My heart filled with pride. Here is a kid who at one time was afraid to ride the carousel at the zoo. He's now climbing 100 foot towers to ride water slides and waiting hours to ride.

As I re-read this entry, I am frustrated that I lack the words for the powerful message I want to convey. The triumph, the victory, the normalcy--I just cannot adequately express my emotion.

The past two days in the park were gifts; I was given back pieces of my son that I thought I might never see. He's just an amazing spirit full of surprises.

I often reflect upon what it is I want for my sons. The truth I always arrive at is contentment; quality of life. I honestly believe that we added to his quality of life this weekend. I know that I added to mine.

The "Fly Girls"

Jackson has been doing a lot of social refencing and engaging peers this summer. Here I am sharing a story from the sitter (whom I hope will forgive me). It's so exciting to have him interacting and engaging with other kids. It's also heartwarming how kids are kind and tender toward him...
From Robin:

Here is the song Jackson was singing with his fly girls Peyton and Kailey: Hot dog hot dog hot diggity dog, we got ears, its time for cheers, hot dog hot dog o problem solved hot dog hot dog hot diggity dog! Its the Mickey Mouse club house song. He sang it and the girls were following him, what he was doing and he laughed and giggled it was so cute! Then he started singing it again. I said Jackson where are your fly girls? He said "Fly girls!!" They came and sang with him again so Kailey, Peyton and Jackson did a little concert in the kitchen while I was making lunch!

Turtle Days

90% of the time I love living in town. We can walk to the park or the playground, ride bikes to magic wand and it only takes 3 minutes to get to church.
BUT
Not this weekend, it's Turtle Days so my son started obsessing about the fair on Sunday after church when he noticed the trailers pulling into town. I literally had to drive him through the park to see that none of the rides are assembled and he's not missing it yet. Of course, he can see the park from our street and he's watching the progress like a hawk. Yesterday, I endured 2 meltdowns and incessant references to "the fair". Here is just a sampling:
"We go to the fair"
"I ride the Ferris wheel"
"I will play the ducky game"
"Bart Simpson will play the water game"
"Let's go to the fair"
"We'll go to the fair on Wednesday"
"Wednesday"
"Fair"

Now, just repeat those comments about 50 times each, with greater intensity and you get the picture.

I really shouldn't complain, it's wonderful to have him excited about it. Honestly, all the other kids are excited too, just not OBSESSIVE! I'll be sure to update regarding how it all goes in the end. Keeping my fingers crossed that he doesn't freak out when it leaves town!

The New Bible

Jackson got a new bible from the church on Sunday.
The children's team gives all incoming 6th grades a new teen version bible. The layout is actually quite cool.
I was concerned about how it would go for Jack. Walking to the front of the church alone to receive his bible isn't something I was sure he'd be up to. We talked about it a bit before the pastor began calling names. Here is a synopsis of our conversation:

Me: "You have to go up to the front and get your new bible"
Jax: "No thank you"
Me: "Yes, they will call your name. Jhai will go up and Josh and Shyenne"
Jax: "No"

So, anxiously, we both waited for the time in the service when the 6th graders were awarded new bibles...

The pastor began calling names.
Amy, Jhai, Josh, Shyenne, Kendall, Jackson, Julia, Noah

Me: "You have to go up and get your bible"
Jax: "No" (as he's standing up)
Me: "Do you want mommy to come with you?"
Jax: "No, you stay there mommy"

And, my sweet son walked up with minimal protest and got his bible.
My heart swelled with pride; doing so was no small task for this big boy.
Again, he takes my breath away with his progress and asserts his independence.
God is good!

Paradigm Shift

It just hit me.
Like. A. Mac. Truck.

All this time, I've been trying to play the mediator, the educator in this.
Wrong Playbook.

I'm the parent.
I'm the advocate.
I'm the voice.
I'm the expert.

My role is to act on behalf of my child
Who cannot speak for himself.

Paradigm shift, I get in now.

In it to win it.

My Hero of the Week

I was at the park yesterday morning for another ball game; seems like we are there more than at home lately. Jackson had a good time hanging out in the dugout with his team, shouting "hey batter, batter" with them. Then he got a little silly, putting on the blanket I took to keep warm around his neck and saying, "Jackson is a super hero!" At that point, I decided he was "done" in the dugout and let him go to the playground to play for a bit. He played on the swings with his "cape". [I suppose at this point, you're thinking Jackson is my hero of the week, and that would be true as well, though not who I was thinking as I typed this title. ;)]

As Jackson was swinging a friend of ours from church walked by with his son's baseball team. He stopped to tell me about playing kickball with the kids at school during the Cinco De Mayo celebrations. Here is what happened:

"Jackson was just watching the kids playing kickball, so I asked him if he wanted to play. He stepped up to the plate and kicked and missed the first ball. I told him, common Jackson, you can do it! On the next pitch he kicked the ball out and ran to first base. When he got to first base he stopped and put his hands in the air and yelled, 'I did it!' He was so proud of himself!"

So, my hero this week is my friend Mark. First, for encouraging my son to play and then for telling me the story. The magic is, Mark was just as proud of Jackson in that moment as I would have been. It still brings tears to my eyes.

Baseball

Jackson had his second baseball game last night.
He did well; though like usual, in a different way than I expected.

When we first got to the diamond, he went into the dug out and sat down on the top of the bench, like all the other boys were doing. (This is great social referencing). Then when it was time for the national anthem, he lined up with his team down the third base line and took off his hat (with the help of coach Tony) and stood quietly and still while the anthem was played. Later, Anthony and Josh helped him learn about sunflower seeds. It took a few tries, but eventually, he got to where he'd put the seed in his mouth, lick off the salt, then spit it out. After the game, he sat down on the grass with Josh and listened to Coach Doug talk about game highlights.

He didn't go after any bats, but he did have a successful game.
I am once again grateful and awed by the support and encouragement he is given by others. Last night, I needed a victory for Jackson; and we got one.

Getting it Right

Middle School--challenging time for nuerotypical kids right?
Put yourself in my autistic son's shoes.
I'm trying to go there to sort this out.
What is best for him?
What would he want?

Of course, when I ask him, he wants to be with his friends.
He wants to stay where he is familiar.
To the extent that he can answer that is.
Change isn't easy for any of us, but especially not for him.

Words fail me, and if you know me, that's kind of hard to believe...

Take Me out to the Ball Game

Youth League Season is here! This year Jackson is going to be a bat boy for a team of his peers. We feel like he's mature enough to understand the safety issues involved. He's been doing a decent job of warming up with the boys and stays engaged in practice for about 20 minutes, but hadn't really had a chance to "get the bats".

Tonight was the first practice that he had the chance to be the "bat boy". I was really surprised how well he did. He wanted to put the bats into the fence and was picking up the multiple bats laying on the ground. I was really proud of him; and I almost didn't take him to practice tonight. I had a meeting after work and then a late meeting at church, so I was going to skip practice, but Jackson was asking about practice within 15 minutes of getting home. ("You go to baseball?" and "Baseball practice is tonight"). So, I packed them in the van and headed to the park. I'm so glad I did! Of course, the boys on his team are sweet and encouraging to him. I'm hopeful that it'll be a fun season. Saturday morning is team pictures; say a prayer that he does ok...sometimes photos can freak him out.

Beach Boys

We are on spring break in Gulf Shores, AL. Jackson is in his element, swimming up to 5 hours a day! When we were at the beach, the first day, Callahan discovered "boogie boards" and wanted one. So we went out to find him one. While at the store getting one for Cal, Jackson non-chalantly picked one up; of course he wanted to have one too! I'm including a couple of photos of him learing to use the boogie board. I was thrilled an impressed that he used the wrist cord to be sure he didn't lose his board in the waves!

Great Expectations

I was running today, without tunes because I had to keep an eye on Jax on the playground. Without tunes, my mind tends to wander and today was no exception. I began to think about what I expect from Jackson, and what I expect from Callahan. I thought about what I know other parents with special needs kids expect from their kids and what parents of "normal" kids expect too. It occurred to me, that most times, parents of "special" kids want their children to be treated the same as other kids. I mean, if my son isn't listening, I expect you to call him on it. If he's doing something he shouldn't, please let him know that it isn't acceptable. In all these ways, I want my son treated like other kids, so in what UNIVERSE is it OK to not treat him like other kids? In what universe is it acceptable and appropriate to pigeon-hole him and determine that he will just reach "this far". Like the all powerful Oz knows just how far he will reach? Really? Really. I'm tired--can you tell?

Cheap Plastic Pooh Rings

Jackson came home from school today and did his usual: drop the book bag, lose the coat and get a snack. Then he came to me to show me his Pooh & Piglet rings. I asked, "Where did you get the rings?" He replied, "Joe"
So, I'm wondering to myself if this is right; check his bag to see if there is a note from the teacher, then can't help myself calling her.
Turns out, there was a birthday celebrated in his class today. We decided it was quite likely that Joe decided to give Jackson his ring so he could have Pooh & Piglet. How sweet is that?
And, how awesome that Jackson actually communicated with me about something that happened at school relatively spontaneously!
Happy Day!

"Get in the Game"

Tonight was the 4th and 5th grade music program at the elementary. I am without words to express how proud of Jackson I am. It was an event full of triumph, a testament to how far he has come.

Others may not appreciate the significance of the fact that he was able to sit patiently, listen to others perform and be quiet and still. He did this for the first 20 minutes of the show. Prior to the show starting, I was able to "drop him off" at his classroom with his teacher and his peers. I honestly never imagined I would be able to leave him and have him be THAT independent. And, God bless those kids in his class; kids he's grown up with, kids who understand and accept him, kids who look out for him and include him. They were signing each other's shirts and a couple of the kids actually asked him to sign their shirt and asked to sign his....

Let me just bask in that for a moment. Wow!

I was very proud of how he was able to follow the steps and songs, how he managed to hold it together when the crowd applauded. I was teary-eyed as they sang "I am a champion". The message was basically, in my own way I am a champion.

There just aren't words for how much this gave back to us. We were actually able to invite his grandparents to come and see him sing. Just like other kids, parents and grandparents we had a "normal" night. I sat next to my mom and really couldn't believe it. My son has come soooo far. I am just soooo very proud of his accomplishment and so very grateful to all the people who helped bring him here!

Print contains the message

I teach reading, all day, everyday to kids struggling to learn to read.
The ironic thing is that I cannot teach my own son to read.
Sure, we've been working on it for years but somehow, it just hasn't clicked yet.

Today, Jackson cut out a Wubbzy picture from one of his magazines.
Then he glued it into a notebook and wrote:
"C B P T W W"
as he was writing he said, "look at pirate wubbzy" very deliberately.
This is HUGE!!!!
I'm thrilled that he's 'getting' print contains a message! I *think* he's even got about 50% sound symbol correct in his recording. I'm elated that he choose this activity on his own and wasn't prompted to "write" something.
How exciting that he is beginning to grasp the value of print!

Pine Wood Derby

Last weekend was Jackson's last Pine wood Derby competition as a cub scout.

He did a great job, and know's "the drill". I'm including a couple of pictures. He finished right in the middle of the group and we were pleased he had fun.

This year, we used a "skin" from Hobby Lobby instead of the mess of painting (actually Jax preferred the skin, he didn't want to paint it). For the record, that skin was a major pain and I wouldn't use one again, but Jack was pleased with his car and it did well.

I can't believe we're 'done' with cub scouts.

Update

Jackson has been feeling a bit punky lately. We went to visit the doctor (whom we both love dearly) only to find out there isn't an ear, nose or throat infection. So, he's basically just got a bug. I'm reminded, again, how limited his communication is. He isn't able to say, "Mom, I just feel like crap, nothing in particular hurts." Which would have saved me the $40 office visit, but I'm happy to pay to know it's just a bug.

He's been thrilled to get outside and play a bit more, though he didn't much this weekend. Earlier this week it was warm enough for him to shoot hoops, swing on the swing set and generally run around the yard.

We're excited that this summer he's going to be a bat boy on a youth league team for the first time. I'm certain he'll be excited to be part of a team again. He's going to love being at the park, I'm just hoping he'll understand his role on the team. Thank goodness he's working with a willing coach and caring kids who will support him.

Daylight savings time is kicking our butts...what kid wants to go to bed when it's still light out? And, by the way, how do you help a kid that already struggles with sleep issues to adjust to 1 hour less in the night? I just don't get it...

Humor Me

Jackson's sense of humor is developing. Lately one of his favorite things to say is, "it's funny."

He recently pretended to feed the fish bacon, then laughed and said, "it's funny." He will laugh when Cal is "going to the naughty chair, it's funny," and I have to remind myself that it's NOT okay, though I'm thrilled at the "normal" sibling "rivalry". Incidentally, he also thought it was "funny" when he filled the bathtub WAY too full! Hard to be mad at the kid when he's got this huge grin and he's giggling, "it's funny."

I'm excited that he is actually understanding, "it's not funny" as well. Yesterday while climbing on a kitchen chair to get a snack from the cabinet he fell and as he was crying, he said, "it's not funny."

Another "piece" of the puzzle is coming into place; bit by bit the pieces are coming together.

Circus Update

Jackson had a fabulous time at the circus and handled it well.
I'm thrilled that he and Dan had this time together.
It's nice to have him growing up, maturing and handling more!

Behind his eyes

There are moments when I look into my sons eyes and see something more. At times, there is something so clear and so knowing in his eyes; as though he is at peace with who he is. That look should bring me contentment. I know it should, but it doesn't. It's a look that is both beautiful and heartbreaking for me.

Heartbreaking because, I want so much more for him. I hope for so much more for him. Beautiful because, contentment is not easily achieved for many, and there it is in my sons eyes. There is something to be learned there. I know that God must be teaching me through this.

I struggle to be content with who he is, struggle to accept that there are many things he cannot do. This, of course, is balanced by pure love; pure love and pride in all that he achieves. I celebrate victories in everyday occurrences that other parents take for granted. I value small steps toward big milestones that I never knew existed. I believe, beyond hope, that there is greatness in my sons future. That greatness may be unorthodox, but it will be great nonetheless.

So next time I see that look. I'll try hard to see it with a light and grateful heart; and remind myself of the greatness that lies within him.

the Circus is Coming!

One of the privileges of being in 5th grade at CES is getting to go to the Shrine circus. This is the year for Jax. I'm a bit apprehensive about this trip, as we haven't tried the circus with Jackson since I was pregnant with Cal (which would have been January of 2003). That time was heartbreaking. Jackson really wanted to be there and see the show, but it was truly entirely too stimulating for him. We took him out in the corridors and he'd peek through the steps into the lights and sounds. He didn't want to leave, but he didn't want to go back in either. It was heartbreaking; I remember all of us leaving in tears.

That was a long time ago, and Jackson has enjoyed several events at the Coliseum since: Disney on Ice, Playhouse Disney Live, several Komet hockey games, even the loud, "Walking with Dinosaurs". So, we're going to take our chances and let him enjoy this "rite of passage" with his 5th grade friends. Just to be on the safe side, Dan is taking the day off work to be with him. I'm really hoping they both have a good time!

Louder than Words

A good friend of mine lent me this book. She read it (so did Jackson's 5th grade teacher) and I hesitantly took it. Jenny McCarthy kind of creeps me out. I saw her on Oprah, telling her autism story, probably 3 years ago. She seemed "New Age"-like and I remember thinking, if I had your resources maybe Jacksons Story would be a different one. Anyway, I took the book and I've been reading it. I have been surprised how much it resonates with me. I'm also saddened by it in a way. Her son is probably 3 years younger than mine. By the time Jenny came on the scene, I had been there and done that, know what I mean?

Reading it reminds me how diverse the autism spectrum is. Jenny McCarthy's son Evan literally seemed to fall off a cliff into autism--yes, she writes about things not being quite right all along, but he began with these life threatening seizures and fell off into the abyss that we know is autism. Jackson actually started on the shores and just waded into autism. Looking back, nothing, not one thing about his developement was unusual, until about 16 months. Even then, he just seemed to stop progressing. He has always been lovingly affectionate, he never lost words. My baby didn't even start the flapping until he was 5 and in special needs school with other autistic children who flapped.

She writes about a metaphorical "window" and pulling her child out of autism through that window; how the window has a time limit. Man, I remember believing that so fiercely. I believed, beyond hope, that RIGHT NOW was the time to FIX my baby. I remember reading everything I could find on the subject--trying the GFCF diet, mixing vitamins into everything imaginable to get my child to take them. The desperate trips from specialist to specialist, and not one of them really knows what is wrong or how to fix it. Mortgaging the house to send him to a private special needs school where they worked with children with autism in very small class sizes. Visiting the geneticist to see if we should chance having another child....

Time is wisdom. Honestly, when Jax was 5 or 6, I lost sleep over the idea that he would wake up one morning and just stop gaining--or worse yet, regress. I tirelessly worked with him, kept him engaged with me, convinced that if he didn't learn it all by 7, it was all over...the window would close and time would stop for my son. Time is wisdom. My beautiful son is 4 years past 7; somehow each day, he continues to grow and amaze us.

I'm not what Jenny McCarthy would probably call a "Warrior Mother" anymore. I've learned to relax and accept my son. That is not to say I wouldn't be first in line for a cure proven to be >90% effective; nor to say I still don't feel a sense of panic and urgency about helping him be everything God intended him to be. I just can, finally, appreciate my son for all that he is. I hope all of you reading this can understand and appreciate that.

Ready for School

Jackson would never admit it and if you ask him he will absolutely say, "no school, no school today". But, I think he is ready to go back.
Yesterday, he got out paper and markers and wrote:

Erne Bert se.

He "read" it to me: "Ernie and Bert are swinging"

WOW! What a big deal, I'm so proud of him! It's spontaneous meaningful writing! I'm still shocked by it!

Laughing out loud!

The other day I was babysitting my sisters 3 kids at her house. It was more than a little bit chaotic, but we survived. At dinner time, the kids were eating chicken nuggets and my nephew asked for ketchup for dipping. In Jackson's world, ketchup and mustard just go together, so we had to get the mustard out too. As I set it on the table, my 2 year old nephew went to put the bottle to his mouth as if to drink it. Jackson thought this was so funny! He laughed out loud and has continued to giggle about it for days. It's such a wonderful gift when he sees the humor in every day occurrences like this one. We'll be laughing for days about the mustard bottle!