autism is a journey

14 Years

2011-10-12T05:24:00.000-07:00

In the first year we were full of wonder,
unsure of what we were doing,
but we were doing it anyway.

You turned one and took your first steps,
we imagined your future before you.

At two you became more serious,
and fell in love with Buzz Light year and Woody.

Then, three.
Our big boy.
We counted your words,
Waited for gestures.

Four: school, therapists, Teletubbies and puzzles,
a cruise where you were lost and found.

At five you stepped into "big brother" shoes,
protective, watchful.

Six playing T-ball.
Seven playing Soccer.
Eight, your a cub scout.
You like being part of the team.

Nine "ah-ha" you know letters and sounds.

Disney Double Digit: planes, trains and automobiles.

Eleven, twelve, the bat boy who hit a home run.

Thirteen finding independence; puberty.

Fourteen...so much more to come.

Maybe there is something I don't see

2011-10-01T10:34:00.000-07:00

Recently I wondered if there is something that I don't see in my son; that somehow the choices we've made for him are holding him back. What is it that I am missing? Over the years we've lived by two basic standards: set him up for success and provide him with a quality life.

So, I don't see him the way others might. When I look at him, I see all the possibilities that stretch before him. I see his strengths, his assets, his abilities. I choose not to see what limits him. But that doesn't mean that I do not live with the consequences of what limits him. That doesn't mean I ignore his faults. Spend an hour or so with Jackson, you'll find that those limitations literally scream at you; you would have to be deaf and blind to miss them. I choose not to let those encompass who he is.

When you look at my son, I want you to see the person that he is. I want you to define him by his sweet nature, his sense of humor, his connection with you. I do not want you to immediately identify him as disabled. I refuse to enable that stereotype, and I have generally found that since this is my attitude, it has become the attitude of those people around us.

There are times that I am confronted with people who do not share my philosophy and it makes me question everything we have worked toward in building Jackson's life. It makes me ask, "Is there something I don't see?"

Change is inevitable. I believe Jackson will promote change in the hearts of many others. It's possible (though I do not believe likely) that his story could change those people who seemingly want him to fit in a box; change them to see he is so much more than the autism that limits him.

I have answered my own question. Clearly, there is something I don't see. Obviously, I have chosen to ignore the attitude of some people. I have intentionally rocked the boat and pushed the limits. Indulge me, how's that working for me?

Dance!

2011-09-16T18:13:00.000-07:00

Remember junior high dances? The music, the drama, the fun? Tonight I get to watch from the sidelines; take it all in. Jackson loves these dances, tonight for the first time he seemed to actually contemplate what he would wear. Once we got here, he had to get a stash of snacks from the concession stand and then he was ready to rock and roll. He practiced the cha-cha shuffle and cupid shuffle during a study period at school. I would have loved to been a fly on the wall watching 6 boys bust a move with him. Tonight, he's taking it al as I work on this entry he is doing the chicken dance. Its the minor miracles like tonight that take my breath away giving me back pieces of a life lost. I have to smile through tears as my sweet boy learns to navigate through life. Tonight, I believe I can see the wings of the angels that guide him. We are blessed beyond measure.

"He's a part of the team." What if?

2011-08-29T15:14:00.000-07:00

Today Jackson had pictures taken with the eighth grade football team. He is going to be the "water boy/manager" for the home games. Watching him participate took my breath away. It wasn't easy or comfortable for him, but he did it. None of the kids made fun of him or laughed at him. One kid wondered why he was there and another one answered before I could: "He's part of the team."
Wow. That's not the answer I was ready to give. I was ready to explain how he was going to "help" the managers at home games. Instead one of his peers answered simply and BIG: "He's part of the team." Wow.
That got me wondering: What if every special needs kid had the opportunity to be included that Jackson has had? What if every kid, starting in Nursery School was accepted? What if parents didn't have to fight for minimal services, accept mediocrity and could instead focus on building support? What if an attitude of inclusion were truly promoted from the top down? What if we didn't have to accomplish this in isolation? What if parents were encouraged to stretch special kids towards typical opportunities? What if our goal was to build relationships within and among typical peers? What if we weren't so focused on isolation? What if, instead of telling parents what is best for these kids, they are asked, "what do you think?" What if the attitude of that football player were the attitude of those decision makers? He made it sound so simple: "He's part of the team."

"I got Garfield"

2011-08-28T10:20:00.000-07:00

Something Jackson has struggled to control for years is the use of the pronoun "I". He would substitute "you" as in "You go see Elmo" or "You fell on the playground." We would try to prompt him for "I" statements by starting for him, "I want to go see..." or "I fell on the playground". I think it was an IEP speech goal for at least 4 years. Well, this summer, in his own time, he seems to finally have control over "I." Like so many other things, this skill just kind of appeared. I think it started with:

"I rode the roller coasters at Michigan Adventures."

and has evolved to:

"I went to Mall of America."

"I saw Winnie the Pooh."

Last night at dinner, he played his favorite arcade game: the crane game. The kid will sit and watch YouTube videos of crane game wins over and over. He even has a ritual with his grandma where she has to sit next to him and narrate while he watches video after video. All that watching seems to have paid off. Last night this is what we heard, "I won a green flame Garfield. I got Garfield from the crane game. I winned a Garfield." Now, I realize that for most kids, winning the toy in itself is a feat of skill. For Jackson it was also a moment of mastery: "I". :)

This morning, he wrote his dad this note:

Ernein toy wallmrt.

[Translation Ernie toy Wal-Mart]. So after church while shopping they picked up an Ernie toy at Wal-Mart. [Never mind the fact that the kid has upwards of 20 Ernie toys already]. When I asked him which Wal-Mart, he responded, "Lima Road". Again, another WOW! moment for this kid. He continues to amaze, surprise and teach us each day.

School Days

2011-08-20T14:34:00.000-07:00

Jackson started 8th grade. Here he is on the first day:

This weekend I'm reflecting on all it took to get him here. Literally. I'm not just thinking of the in the moment stuff (like will he remember to put on deodorant and what shoes will he wear), but also the years of school that came before. I'm remembering how in kindergarten and first grade we visited his class and met his teacher to take photos before school started. I can't forget second grade when he missed the first day of school because he was having dental surgery. I'm remembering 4th grade when Arthur and DW went to school with him everyday, and he is remembering 5th grade when pirate Big Bird and Elmo accompanied him each day.

So much emotion, effort, energy, time and resources are reflected in this photo. We know it's best for him to stay in school with the kids he's been with since he was four, but there are others with another idea. Getting him here didn't always seem possible, and though I've always had a vision and purpose for our path, I haven't always been confident that my path was God's path for my son. Somehow, God quietly reminded me this summer on more than one occasion, we are following His plan for Jackson. I know God must have been with us all on those roller coasters at Michigan Adventures (!) and I could feel His warmth and love when my big sweet boy enjoyed the drive-in theatre with several friends.
Now I am praying that He will continue to be with and bless my son. The beginning of school is almost invigorating. Everything is shiny and new, kind of like a box of crayolas not yet colored with: sharp, sleek just waiting for a kid to pick them up and make some magic with them. I am praying God will continue to use those vibrant colors to illustrate my son's life. But if His plan includes some muted colors and greys we are ready for that too. I will hold fast to His plan for my son, and pray us through.

Summer Update

2011-07-19T07:09:00.000-07:00

Here we are in early August, how did that happen? Our summer has been busy (when isn't it?) and Jackson is enjoying days without school and less structure. Here are some high-lights:
Turtle Days
This year Turtle Days had a new ride/game company. This actually worked in our favor, while we missed the giant Ferris wheel, we were happy to have fewer game options to tempt Jackson. He does seem to have a gift for noticing the obscure. Somehow, he managed to find the few licensed characters (Bert, Pooh, Zoe, Kanga) the games offered. We did come away from the fair for a lot less money this year, and Jackson honestly handled the end of the fair much better than in the past.

Fireworks
Jackson isn't a fan of fireworks. He seems to like the visual display, but the noise involved is just too much for him. This year during our friends annual fireworks party, Jackson did a great job of self-regulating. He stayed in the house and watched the view from the sliding glass doors. We were pleased that one of his friends was happy to sit inside and hang out with him to watch the show indoors.

"Fun Fridays"
We kind of have a "fun Friday" summer tradition in our family. We've had fun Fridays for years in the summer with different friends. This summer he enjoyed seeing Cars and spending time playing games at Paige's Crossing. His favorite was going with a group of friends to see the new Winnie the Pooh movie. God bless his friends who went with him, I remember buying 6 tickets to see it and the window guy asks, "how many under 12?" and I have to answer "none".

Michigan Adventures
Our church youth group went to the Michigan Adventures amusement and water park in July. Earlier in the summer we saw a Michigan Adventures billboard and he talked incessantly about it. We had to mark the date on the calendar and count the days down to July 18. He was beyond obsessed and excited about it. Finally, the day comes for us to make the trip with the youth group. Jackson had an incredible time at the park. We bribed him to ride a roller coaster, truth is the first coaster we rode was INSANE. I thought we were gonna roll right off the tracks! I also knew for sure he wouldn't ever ride another coaster once we got off that thing. I was wrong. He couldn't wait to get on another coaster. In fact, he was walking faster than any of the rest of us to get to the Thunderhawk coaster. As we walked up the path to the loading station for the ride, Jackson stopped and said, "Mom, I'm scared." I caught my breath in my throat, and told him it was fine and we didn't have to ride this ride we could go back to the water park. He answered, "No, I want to ride it." I need a pause button here, because I just couldn't believe he gave words to those emotions, further I couldn't believe he wanted to get on the ride. I choked back tears and got on that coaster with my amazing son. I think it was the best coaster ride I've ever had. We went on to have fun in the water park and he made sure we left with all the kids in our group. On the ride home, the boys tried to teach him to make fart noises through a straw. He also got a big kick out of the cow that we almost hit in the road on the way home. He still giggles as he says, "A freaking cow was in the road".

Vacation
We went on vacation to the Mall of America where we enjoyed Nickelodeon Universe and caught a Twins/Tigers game. Jackson was less thrilled with the roller coasters here, "No roller coasters for Jackson." Though he did willingly ride them, he wasn't as excited about them as he was when he was with the youth group. I credit the "peer factor" with that. Jackson is much more willing to do things he sees his friends doing. It's God's way of reminding me why I fight for him to stay with these kids. Anyway, on vacation he did a great job adjusting to a variety of settings. We left Minneapolis and went on to spend a couple of days in the Wisconsin Dells. Jackson enjoyed the water slides and wave pool at Noah's Ark Water Park. He wasn't crazy about going on the Duck Boat Tour (he called them Chia Boats, though I never figured out why) but then once the tour got started, he had an awesome time and laughed as we went from land to water in the duck boat.

Birthday Party
The weekend we returned from vacation, he went to a birthday party. He really didn't want to go, I think he was just worn out from the frantic vacation. I made him go, thinking he'd just make an appearance. He ended up staying the whole time and having a great time with the kids who all just accept him for who he is. I never stop feeling grateful (and humbled) by how included and accepted by his peers he is. We are blessed as a family by our community.

Last Hurrah
So, as I type this, I am trying to decide how to wind the summer down. We need to start getting him prepared to start back to school. He really needs the structure and routine, but the adjustment is always a nightmare. This year, we add puberty into the mix. I'm just praying we all adjust and settle into routine.

At the end of the day, I'm pleased with how the summer has gone for Jackson. There have been times I didn't think I could survive another minute of summer (like when he asked 40 times in 30 minutes about going to Michigan Adventures with the youth group) and there have been times I want to seal off and keep forever scared (taking 6 teenagers to see Pooh, having Jackson try the zip line on vacation, knowing he's making memories). We survived another summer and are looking forward to football season!

Warrior Mothers

2011-05-03T18:36:00.000-07:00

Sunday is Mother's Day, I always dread reading all the cards, trying to find one that shares the message of my heart and more. This year, I have decided to fore go the "perfect" card and share these stories of the mothers of my life, who have shaped and defined me as a mother.

I would not be a "warrior mother" without the influence of many amazing women. The most amazing of all, my mom. My mom is the kind of person everyone likes. She is kind, sweet and rarely says anything unkind about someone. She is quick to turn the other cheek and is my example of treating others the way you want to be treated. She anchored me in my faith, gave me room to grow into my own person and catches me when I fall. My mother never gave up, and she gave us all she had to give. I continue to be amazed at how she managed us all and how she continues to be full of quiet strength. I want to be like her when I grow up; less likely to be emotional, more likely to be a strong shield. She is my confidant, hero, role model and friend. If you know me and love me, you must know that my mother is of great character.

Though my mother has shaped the mother I have become, others have colored the canvas. My grandma, who grows weaker each time I see her, is another example of strong faith and value. She always had a way of making me feel important. My childhood was filled with colorful experiences with my her. She showed me the world and knew much about Gods creatures that filled it. Simple things made her happy. She grew up recycling long before the first Earth Day or Al Gore's global warming. If momma was the coffee, grandma was definitely the sugar and cream. She made difficult things a bit more bearable, and memories with her are colored with the giggles and awe of a younger me.

Now, through tear filled eyes. I remember my beloved Mimi; whom I never remember seeing drive a car (though I am told that she knew how). Mimi shaped much of my early childhood, a time of innocence and joy. Mimi knew that making triangle shaped white cheese toasties would make a day special. She would always make time to chat with me on the phone, and while I have little memory of what words filled those conversations, I know she was happy to sit and listen. Her legacy, I think, is resilience. The power to continue to see a better day is coming and to embrace the blessings of each day. These are so much a part of who I am, years ago I wouldn't have dreamed how I would need them.

My grandma Anders came into my life when I was a teen and whispered great words of wisdom: "go now and experience life while you are young with no responsibility". Grandma was an example of grace and joy. I will always be grateful for the love she gave me.

Aunt Judy who also found ways to make me feel loved and special. (And still does). Aunt Judy is the example of the aunt I am certain each of my sisters and I all aspire to be like for our nieces and nephews. My darling Aunt Kathy, whom I miss greatly and regret so much not telling more often when I could how much I loved her back. She always, always made me feel like I belonged to (and with) her. She would joke how much we were alike. Aunt Kathy showed me unconditional, unquestioning love. And Aunt Peg, how you demonstrated devotion inspired me. My aunt Peg has the grace of my grandma, and an amazing spirit that is an example of faith to me. Each of us is given a path to walk with God, and Aunt Peg is my example of keeping the faith; finding God in everyday life.

My mother in law, Barb, who reminds me-without knowing-that someday, I will give trust a piece of my heart to another women. Being a mom to boys who will one day cleave unto another. I reflect often on what I hope for my sons and am grateful for the gift of your son.

One last momma, I couldn't leave out, Kathy. You were a role model for me in a way to this day, you probably do not understand. You renewed my faith in family at a time in my life when I wasn't convinced. You made me a part of your family and to this day I know I am loved. Thank you for modeling patience and love for me; for helping me appreciate "picking my battles". Thank you for choosing to include me in your life.

From each of these, I form the "warrior mother" me, striving to treat others kindly, to be resilient and taking time to appreciate the small things. A mother who tries to make my conversations count, who knows when not to sweat the small things. I try to find the ordinary miracles of the day and work to share the love and faith that makes this time on earth mean more. As this Mother's Day approaches, I am grateful for these examples and hopeful that each of them sees a piece of themselves in the mother I am today.

Out of the darkness

2011-04-25T14:16:00.000-07:00

I've contemplated enough; I've come to this conclusion: Ten years ago, the 31 year old me was terrified at the future and determined to "fix" my son. [I was certain it was something we could easily handle and clung to the "high functioning" label many had placed on my sweet son]. Here's the thing I didn't know: autism didn't literally take away my son. In fact, we've managed delightfully in spite of it.

So, this is what I have to say to that younger, determined, "warrior-mother" me:

You will cry tears of joy as you watch your son hop on a two wheeler and proceed to ride it down the street.
You will be amazed at what a loving and protective big brother your firstborn becomes.
You will cheer with the rest of the crowd as your son runs the bases in T-ball.
You will become a voice for others, sometimes not knowingly.
You will laugh when your son uses "damn" appropriately; then desperately try to figure out when he heard you or his dad use that word. (Only to discover weeks later that he heard it while watching a Teenage Mutant Ninja Turtle movie).
You will choke back tears as you watch him perform with his peers in a music program.
You will find joy in watching your son mimic others.
You will inspire others and become a role model.
You will be speechless that suddenly, almost overnight, your son knows all the letters of the alphbet and corresponding sounds.
You will laugh in the face of the "autism gods" many times over.
You will face the future, tentatively and bravely.
You will rejoice in the miracle of 2-word phrases, then 4-words, then sentences with too many words to count.
You will come to know the "window" for learning does NOT close at 7.
You will conquer the movie theatre trauma.
You will cheer with many others at his homerun in the ball park.
You will know gratitude and humbleness to a depth you cannot imagine.
You will learn how much your son has to teach others.
You will find blessings in the darkness.
You will be able to breathe.
Somehow, someway, you will find the strength within you to be a mother to an incredible son that God gifted you with.
You will be grateful for all that he is, and sometimes for all that he isn't.

Into the light, I see the other side.

Why does this still surprise me?

2011-04-22T18:23:00.000-07:00

We are coming into our second decade of living with autism.
The second decade--that gives me pause.

Ten years ago, I had no idea that this could continue to be so heartbreaking; such a struggle. I wasn't prepared for the roller coaster ride that would become my future. In retrospect, that makes sense; I absolutely did not have the strength then to endure or process the extent to which autism would play a part of our lives. If you read this often, you know that I try to see the blessings that fill my life because of my son.

I rarely go to the dark side. The side that leaves a festering wound that refuses to heal, like a scab I obsessively pick. This is one of those moments, I can't help myself or find my way out of the darkness. A time when I feel suffocated by how autism has robbed me of my son. How it has stolen his childhood and taken many things from my family that I have no way of getting back. How it has the power to define his future and limit his opportunities.

Autism has been on our family vacations, is part of church every Sunday, at weddings, birthdays and Christmas's. Autism is the black shadow that looms and without question is not to be ignored. It so greatly defines our being that even our typical child has suffered residual effects. Parts of his childhood are colored by the dark shadows.

A decade of living with autism.

As I wander through this darkness there are glimpses of light. Muted grays mixed within the black. The reminders that this journey has not been with out purpose; our lives are colored with unusual joy. Happiness in the little things; "ordinary miracles." A rainbow in the storm: his pure heart and genuine laughter.

The only assurance of the coming decade is this: autism will be a part of our family. The autism shadow will continue to cloud our experiences. My weapon against the darkness is prayer and attitude. Prayer pierces the darkness with light; turns the canvas of life from black and white to brilliant colors. In the next decade my son will remain a child of God, full of purpose and light. I will cling to the Lord as my guide into His light. And continue to pierce the darkness with light.

Time Capsule

2011-04-13T15:15:00.000-07:00

Once upon a time, I was an overzealous expectant mom with a grand idea: a time capsule. We were so overjoyed to finally be pregnant; allowing ourselves to dream about this life we created. So, in the final trimester of my pregnancy I decided to make a time capsule for our beloved baby. We sent out letters to friends and family all over the country with a survey of sorts and imagined when we would open the coveted envelopes. One friend suggested when he graduated high school, another maybe when he was studying his family tree as a 10 year old. We never really settled on a time for sure; I decided I would know when the time was right; when those words would mean the most to him.

I stumbled across the box today, filled with baby outfits, his hospital hat and a pin from Northside Hospital announcing "I'm a Dad". The box also holds his first boy scouts derby car, a paint stained t-shirt from his first experience with finger paints, a beanie baby and newspapers from the day he was born. (He was born on a Sunday, so the papers are thick!) Seeing all the memorabilia put my heart in my throat for a moment. Made me reflect for a moment on all that we lost...

I'm trying not to stay in that moment, praying that truly I will know the right time to open those envelopes. The time when it will be most meaningful to my special son. There is a seed of hope inside me that believes there will be a time, in my lifetime, he will understand how special those letters are. And then, this journey will be in its own time capsule, a memory from another time when autism colored so much of our life. In the end, there is always hope.

World Autism Awareness

2011-04-02T09:21:00.000-07:00

1 in 110
I wish those were my odds to win the lottery...I can't see that statistic now and not know the significant meaning behind it. 1 in 110 children are on the autism spectrum. Last Sunday's Parade Magazine featured the headline: "Autism's Lost Generation". It's sobering, haunting, and depressing to consider what's been lost to autism. I generally try to find the good in it; see the positive side of the hand dealt to my son. The joy he often has in his heart is genuine, pure. So, in honor of autism awareness, this is what I want you to know about autism (and my son):

*Autism robs my son of the ability to express his ideas and emotions clearly; but that doesn't mean he doesn't hear or comprehend.

*Without words, my son speaks clearly to those who are open to his world.

*Though socially challenged, he wants friends and yearns to belong as much as any other kid his age.

*Extreme sounds, sights, smells and sensations can be overwhelming to him. He was probably 9 before he could tolerate a movie theatre; 11 before he could "enjoy" fireworks. He is able to work through his sensitivity to some things, but others will always be an issue.

*We take nothing for granted. Every part of our lives is pre-planned; there is always a back up plan.

*Autism is expensive, period. It just is.

*Jackson is intiutive; he can sense people who are "on his side" and steers clear of those who are not.

*We choose to have him participate with his peers as often as possible. Our motto is "set him up for success." We expose him to as much as possible and refuse to let autism limit his experiences.

*Understand that people with autism (especially children with autism) look normal. Looks can be deceiving.

*Jackson is a creature of habit. Routine is comforting to him; change triggers anxiety.

*We celebrate the little things: haircuts, bike rides, sunflower seeds, "joint attention".

*Never underestimate his ability to problem solve. This kid has spent 13 years figuring out how to communicate his needs. Ask yourself how you would communicate in China? Further imagine you didn't even know how to use non-verbal clues or gestures to communicate.

*Breakthroughs can come when we least expect them and he tends to progress in spurts. If he's struggling academically he may be making strides socially (and vice versa).

*Please, please know that we have tried many, many "cures". Diet, check. Sonrise, check. Speech therapy, check. VB, check. TEACCH, check. Vitamin therapy, check. The list continues. Chasing the "cure" is emotionally exhausting. We're doing everything in our power to improve his quality of life; we just no longer exhaust ourselves with every new therapy.

*We love him fiercely, in a raw and sometimes painful way. He loves us purely, the only way he knows how.

Inclusion & Ramblings...

2011-03-08T18:35:00.000-08:00

I have been doing research on autism and inclusion--the pro's and con's if you will. There is so much information out there, and so many opinions. I honestly think one could make a strong case either way citing "experts". At the end of the day, I'm left trying to sort through it all and decide what is best for my son. I have to speak for him, unfortunately he doesn't have the words. Well, that's not true, actually he does say he wants to "stay with my friends"; he has no interest in a "new school".

Alas, next comes the unnerving thought, what else would he say if he could? Is he aware of his social plight? Does he wish for something different? Would he prefer to be educated with "similar" peers? How different would that look for him? How hard would it be? Would it be too easy? Would he miss his friends?

I am forced to face my greatest fear: REGRESSION. In the end, that is the great unknown; the black hole of my existence. What if he just stops moving forward? What if he ALWAYS loves Sesame Street stuffed animals? I think I can live with that...That is not the black hole--the dark place where regression lives is a place where he loses his place in my world and reverts into his own. Regression is a disconnect, a loss one does not easily recover from. Regression is the rug pulled out from underneath us, and the worst part is not knowing what may cause it. I think I have a clue about some things that might cause a regression: a huge change in routine, setting or schedule could send a typcial person over the edge. Jackson isn't at all typical. Take him away from everything and everyone he knows and it's like a "perfect regression storm".

REALITY is now. Reality is, "Mom, come here" and "Cal jump with me" or "Hey dad". Reality is the notes he writes us in church asking to go to "Toysrs" or to tell dad to draw "big brd o hrd" [big bird goes on a hayride]. This reality isn't one I could have hoped for even 3 years ago. I try to remind myself of that as I ponder the next 3 years. How much will he change and grow? What does HE want for his future? How capable is any 13 year old of explicit future planning? Most of them I know are vague at best regarding future plans: I want to go to college, I want to make a lot of money, I want to drive a nice car. Jackson wants to go to "mickey mouse's house". [I am smiling as I type that one].

At the end of the day, I put my head on my pillow and pray. Pray that God will guide me to His awesome plan for my son's life. Pray that I will see His hand in it all; pray for insight and peace. Pray for a sense of direction and to listen to His will, and the strength to accept it.

Reflecting

2011-02-24T11:27:00.000-08:00

I am thinking about Jackson's upcoming annual case conference. (For those of you with typical children who are deprived this privilege, a case conference is when you meet with teachers and administrators to plan for your child's education for the upcoming school year). I always get a little anxious about these meetings; like I'm waiting for the ax to fall. It's not easy hearing how academically challenged your child is; it's especially difficult to read it in black and white.
So, this year, I am preempting those feelings with my own list of all the gains my son has made this year. I will need these accomplishments to temper the weight of the world as I contemplate how far he has to go. With that, in no particular order, are the accomplishments he has managed since the fall:

*He is making attempts to read words. There is evidence that he is checking through words and using phonics to sound out unknown words.
*He has an increased interested in art. He will draw illustrations and talk about what he's drawn. His drawings are becoming more sophisticated.
*Jackson is using print in a meaningful way. He has intentionally written me notes to make his point even greater. He will record things on the calendar and has even at times, added words to his illustrations.
*Finally, my son is able to match one to one when counting. This skills is helping him to have an understanding of other basic math concepts: addition, more, less.
*Socially, he continues to laugh in the face of the autism gods. In the fall, at a sectional football game, he wandered off from our family, and when I caught up to him and asked him where he was going, he answered, "to my friends". My heart stopped then, as I watched him and his friends "hang out" at the game for the rest of that quarter. At the next sectional game, he asked again to go find his friends.
*This year, he went on a big birthday party celebration and actually rode all night long in the limo without mom. He was calm, and enjoyed being with his friends.
*That initial excursion led to another independent event: going to the circus with a group of friends.
*He routinely greets his friends and their parents at church (with out prompting). He is ever aware of where his friends are.
*He clearly demonstrated his awareness of the wants of others when changing the music in the car to something his friends would enjoy.
*He asks about going to do things with his friends, and will talk about times he's shared with his friends, "You went to Lazer tag with Jhai and Trevor and Seth"
*He initiates activites with family members. He'll call, "Cal come here" or "Mom sit here."
*Jackson follows directives easily. This is exciting, there was a time when he didn't understand a simple command like: "Put the plate in the sink" Now he can follow more complex commands "Take the clothes out of the washer, put them in the dryer and press start." or "Go to the kitchen and get mom a coke"
*He's more vocal in general. I'm often greeted with a "Hey mom" and surprised when he asks about or announces something.
*Amazingly, he has adapted to having seven periods in the day, and adjusted to seven teachers. I record this, because it too, is an accomplishment in its own right.

These are the accomplishments that come to me right now. Absolutely to be celebrated, without question they aren't taken for granted. I am proud of all my son has become and anxious for his future to unfold more triumphs.

Reading!

2011-02-15T12:48:00.000-08:00

There are some things we've decided not to focus on with Jackson. For example, learning to tie his shoes. I mean, we figured, plenty of grown men wear shoes that do not need tying, right? I've even been known to say, "Even if Jackson can't read, he has to be able to communicate with others." I do think it's so important for him to know how to read, it's just been something beyond him. Until now.

Last night, Dan came in after bed time with a sparkle in his eye saying, he is reading, really reading. Evidently, Jackson would go back and check through words Dan would call his attention to, and was really looking at the words and reading the Calliou books at bedtime.

There are times, I again reflect on the puzzle the metaphorically represents his life. So many people have a part of the person he is today. Each one represents a piece of the puzzle coming together. The preschool teachers who helped him understand his role in school; Mr. Kempton, the principal with a vision for kids like Jax. Mrs. Markley, for lovingly, gently encouraging Jax. Mrs. Schubert for stretching him outside his comfort zone. The coaches, who helped him feel like part of a team. The kids who have grown up with and around him, supporting him, including him; these kids showing him the way. Our family members and friends who love and support him and us.

"Jackson is reading!" I really want to shout it from the tops of the mountains, I want the world to know. Just like so many other things with Jack, this skill came along quietly in its own time...it's just another ordinary miracle. God truly does amazing things!

"Irritating"

2011-02-02T09:58:00.000-08:00

We have blessed by the people who have helped care for Jackson while Dan & I are at work. Starting with his first sitter, "Nana Lesley" who cared for him as an infant (and we were ever SO grateful she did) to our current caregiver Miss Robin and those in between, Jackson and Callahan have both been cared for by devoted, loving people and I will forever be grateful for each of them.

Recently, during a snow day while at Miss Robin's house, Jackson, in typical Jackson form, was obsessed with going to Wal-Mart for a coveted Mario toy. I had promised him, "First Miss Robin's, then we'll go to Wal-Mart". When he's "stuck" on something like this, he needs to be constantly reassured that, indeed, the plan is to go to Wal-Mart for the promised toy. God bless Miss Robin who reassured him more than once of the plan. As the day wore on, his anxiety increased and he went to her and said, "You go to Wal-Mart" to which she responded, "Your mom will take you to Wal-Mart". Of course, he went through this ritual with her multiple times through-out the day, waiting for me to get there and take him to the store.

At some point, Robin's own mom stopped over and while she was talking to Robin in the kitchen, Jackson came in and started his litany. "Your mom will take you to Wal-Mart". God bless her, Robin's mom thought he was talking to her, and she said, "I'm not taking you to Wal-Mart Jackson!" To which Jackson turned, walked out of the kitchen and announced:
"You guys are so irritating"
How Robin managed to suppress her laugh and use it as a teachable moment, I will never know. She called him into the kitchen and told him she loved him and wasn't trying to irritate him.

My reaction: I cannot believe my son used such incredible vocabulary to identify his emotions and then, it was, "Where did he hear the use of that word?" Dan & I both felt a bit guilty wondering if that expression had come from either of us...the mystery was solved the next morning when "Martha Speaks" came on and the dog announced "you are so irritating". I'm really proud of Jackson's ability to internalize and transfer the use of that word. And, I'm forever grateful to my dear friend who managed to use the moment as a teachable one!

birthdays, holidays and notes to mom

2010-12-27T09:37:00.000-08:00

December has been a whirlwind of shopping, cooking, wrapping, visiting and celebrating. It's been a busy month and now I have a minute to reflect on how Jackson has handled the holiday bustle.

I was thrilled and nervous when he was invited to a special birthday party. The kids were going to ride in a super stretch limo to the movies and then to see the holiday lights at Franke Park. I didn't think he would want to ride in the car without me. Even when he attends youth events he won't ride in the church van without Dan or I. So, I was skeptical and anxious (maybe feeling a bit like he often does). I wrote a social story about the party and hoped that it would ease his anxiety. I'm so happy to report that he did just fine. He had a great time riding around in the "big car" with the kids. He was so excited that during the school day he almost ruined the surprise when he asked a friend in choir "You ride in the big car after school?" Words cannot express how relieved and proud I felt. It was one more step towards independence. One more piece of "normal" returned. Just having him included in the party is such a gift.

He handled our family Christmas marathon like a trooper. For us, Christmas started on the 19th and didn't end until the 26th. He's much better able to self-regulate in noisy crowded situations. This year, he had a litany of gifts he wanted for Christmas: Abominable snow monster, spotted elephant, charlie-in-the-box and dolly from the misfit toys, a big Charlie brown, a big Snoopy and a big Rudolph. Honestly, we worried because even though he was getting everything on his list, he wasn't getting them all at once. We held our breath Christmas morning, hoping he wouldn't have a meltdown over missing a few of the coveted items. Again, he surprised us with his patience and resilience. The only disappointment was that he doesn't get overly excited when he's happy. It's almost a letdown. He opens it like he knew it was coming. In the end, I'll take that.

Today I am taking him for the meningitis vaccine. I'm so not looking forward to it. Earlier as I was otherwise pre-occupied he brings me this note he as written: "Toksin Ts" and announces "Go to tokens and tickets." The note took my breath away. It's the first time he's used writing to make a point. His teacher will be happy to know all her efforts in written expression are paying off. He's beginning to understand the power of print. I'm blessed by this kid, who keeps me guessing and is full of love.

before autism...

2010-12-12T09:37:00.000-08:00

I was cleaning out old pictures today and came across one of my favorites of my niece Cora and Jackson when she was almost 3 and he was almost 2. They are dressed in matching outfits and look more like siblings than cousins. It is precious beyond words.

Funny how a picture can freeze a moment in time; be so joyful and sad at the same time. I think that picture probably best represents life before autism.
It's hard to think about and sometimes hard to remember what life was like then. Jackson's life was this partially written canvas waiting to be filled, with hopes and dreams and so many, many possibilities. Certainly, before autism, I never imagined autism being a part of that picture. I remember praying fervently that he would grow into a man of faith. I remember feeling like he would do amazing, incredible things with his life. I suppose that's the way all first time parent are: full of anticipation and hope. Our lives before autism were filled with joy in all that he did, we were amazed by who he was and intrigued with the possibilities of who he would become.

It strikes me just now how different it was when Cal was a baby. I was so consumed with fear of autism that I didn't spend much time hoping, dreaming, imagining possibilities (I probably make up for that shortcoming now, dreaming big for and with him).

I work hard on seeing the glass half full. So much of Jackson's purpose and message in life is the work of God. Sometimes I just want him to be not so much what he is. I suppose there are qualities in all kids parents would like to leave out. Even as I type this, I feel guilt for these emotions. I don't know who Jax would be without autism. I rarely indulge that line of thought. Instead I try to focus on all the things I wouldn't have without autism. I try to consider how it makes me a better person.

In the end there is a definite mark in my life timeline:
before autism
after diagnosis
It seems like there should be like a vast chasm between the two. Instead, it's a blink of the eye; a turn of the page. It's a sunset and sunrise all in one fell swoop.

Dear God,

2010-11-22T15:31:00.000-08:00

After watching "Letters to God" with the youth group I am inspired to write:

Dear God,

I find myself often asking, "why". So many things do not make sense; so many things I just cannot understand. In the quiet stillness, I sometimes hear Your answers, yet I'm yearning to really know more.
I'm working hard to understand or maybe I'm working hard to accept. I have faith and I'm working on being content with that.
When I break down the "why" it morphs into these other questions:
What is the lesson here?
Who can change and grow through this?
How can I change and grow through this?
What else can there be?
Who can protect us?

And as I type the last question, the answer fills my heart. I know, I know the answer. I know the loving protection and soothing Christ brings. I know the peace. I'm human and too often I forget.

I'm working on me God, but I cannot do it alone. So be with me, guide me, teach me to be more like Him. And while your at it, can you be with my sons?

Mimi and Grandpa and the bells

2010-11-07T17:44:00.000-08:00

This is just one I have to write down; I don't want to forget it.

Callahan has been to the cemetery with me a couple of times to "visit" my beloved Mimi & Grandpa. The first time he went he was just four, and as I wiped away my tears, my sweet little boy said, "Don't worry Momma, I'm sure your Mimi will be back before it snows". More recently, he had deeper thoughts, "How do you know they can see us mom?" and "Where are they mom?"

During both visits, the bell tower chimed. When he was 4 Cal exclaimed, "Listen momma, it's the angels I can hear your Mimi's bells". At 7, when he heard the bells, he skeptically asked, "What's that mom?" My wise reply, "That's my Mimi telling you good-bye".

Well, today I ran in the "Jingle bell 5k". Part of the race includes attaching little jingle bells to your shoes. [I also run thru Lindenwood Cemetery on Thanksgiving Day every year, Cal knows that's when I "visit" Mimi]. Tonight when I got home, he noticed the bells on my shoes and said, "Oh, did you wear those for you Mimi mom?"

I love, love, love this kid! I am certain that my Mimi is looking at us smiling and thinking to herself, "Look at those two peas in a pod". For the record, I know now, better than ever before the meaning of "contrary"(the word my Mimi so often used to describe me). I honestly think that my son's picture is next to "contrary" in the dicitonary. That said, I also know the meaning of tender hearted. What a spirit my wise little man has. Tonight, for that I am grateful!

...Happy

2010-10-31T16:35:00.000-07:00

We did it!
Jackson put on his Mario costume and headed down the street.
At the first few houses he needed prompting on the "thank you" part, but overall he did great! He loved it; noticed other kids costumes and would comment, "The boy is Spiderman, Jackson is Mario". He waited his turn and handled the crowd.
Here is a of picture the boys with Dan enjoying Halloween:

Hopeful...

2010-10-31T13:55:00.000-07:00

Once again, it's Halloween. The favored holiday of many kids filled with costumes, candy and fun. Halloween has not always been a favorite of Jackson's, so this afternoon I am hopeful (ever so hopeful) that he'll enjoy tonight. If not for his sake for Callahan's.
The day has been uneventful.
The coveted Mario costume has been purchased.
The weather is cooperating.
So we wait...and hope.

I so much want him to just enjoy this ritual. Celebrate the holiday, relax and delight in the moment. I want his brother to have a "normal" Halloween. The memory of last year's Halloween fiasco haunts me. I want this year to be different.

So, I'll update here the good, the bad, and the ugly.
Here's to hoping the ugly is just photos of ugly costumes!

Just One Moment

2010-10-19T17:38:00.000-07:00

Ever had a moment that you just want to last and last? A memory that is short on time, but long on heart? Tonight we traveled to watch the 7th grade football team compete in their last game of the season. It was one of those times where I wasn't sure at all what to expect from Jackson; new place, different field and stands. He wasn't completely prepared for it. Anything could happen.

The weather was perfect. Our team was winning and my son was cheering. He held up signs that the cheerleaders held and led many in the crowd in the chant, "Defense, Defense". He was excited, engaged and involved in the game. He had "shared attention" for you therapy gurus out there. He was content, happy.

In that moment, autism didn't define him. Autism didn't limit him. Autism didn't suffocate him. In that moment, he was cheering for his team; nothing else mattered. In that moment, I felt triumph. In that moment, I felt like I had done something right. It was the kind of moment with energy of its own. The kind of moment you want to hang on to. The kind you want to package away to retrieve on dark days.

It's my moment to cheer now, "Way to Go 'busco fans!" Once again you all made a priceless memory. Thanks for being a part of his life.

On Life and Afterlife...

2010-10-13T18:49:00.000-07:00

It's been a busy couple of weeks! Jackson turned 13, THIRTEEN, yesterday. We celebrated with his friends on Sunday. The kids all had a great time playing mini-golf and hitting in the cages at the Plex. Jackson was thrilled to have quarters to drop in the crane game, over and over again. [Thanks Larisa!] Everyone had a good time, and Jackson did as well as I could expect him to do.

His incredible teacher took time to bake a cake with him on his special day at school and used sugar letters to spell words on the cake. Evidently, he loved making and decorating the cake, but when it came time to actually eat the cake, he insisted: "No, you can't make me!" At which, this wonderful teacher, took him around to several other teachers and had him share his creation with them. That's the thing about Jackson, he knows how to throw you for a loop. Who would think a kid wouldn't want to eat a cake he helped make? Anyway, he had a great birthday, topped off at the 7th grade football game where the cheerleaders called him down to hang out with them and the Eagle Mascot at half-time as the fans joined in singing "Happy birthday". Only in Churubusco does this kind of magic happen. Someday, someone will make a movie about it, I'm sure. :)

I spent Jackson's actual birthday saying good-bye to my beloved Uncle Jack. Who reminded me from the time Jackson was born, "He'll always be Jack to me". I've thought a lot about Uncle Jack these past few days...he was an amazing, generous, and loving person. [I could stand to take a page from his book many times!] I've thought about Uncle Jack as another angel watching over my son from heaven. I've considered how my Jackson brings out the best in people. I could cite many examples, but just now, my heart is heavy and my eyes are tired. I'm content just to reflect on the goodness of so many people and especially, the goodness of one who will be greatly missed. Keep your eye on him from up there Uncle Jack! <3

"Don't Cry Mom"

2010-09-26T10:24:00.000-07:00

The other day, I wanted something from Jax (I don't remember what now) and he wouldn't give it to me. So I pretended to cry to get him to do it (every parent has pulled this trick a time or two right)? I was surprised by his response. He was really concerned and said, "Don't cry mom," "It will be ok". It was actually very sweet and left me feeling guilty. He truly has a pure heart.

Last night we all went to a bonfire. The boys both had a great time, and Jackson eventually wandered away from the adults to "party" with the kids. It's so hard for me to let him have this independence; yet so important to him. In the end he had a fabulous time hanging out with all the kids and was even giggling about it this morning. I am, as always, ever so grateful for the friends we have and the support Jackson gets from so many others.

Just a random update

2010-09-05T19:08:00.000-07:00

Jackson is adjusting to being back in school. This fall is particularly challenging as he adapts to a more "middle school"-type schedule changing classes each period. There are a lot of transitions for him to adjust to, but so far he's handling it. At home, I'm giving him a little more "room"; allowing him time to relax, and decompress after school. We haven't pushed the homework.

Last week, he brought home pictures from school of Super Why and the Teletubbies. He was insistent on making a book, even asked me to "get a stapler". So I quickly stapled together some notebook paper in a hastily created "book" and he went to work cutting out the characters, gluing them to the pages and writing his own "story" including his favorite characters. I was thrilled that he wanted to write, and that he stayed with the "project" for a good 15 minutes! The book is really just slapped together and I so wished I had put it together with less primitive supplies, but, I am so proud of it and will cherish it, as this was the first time he really initiated the writing.

Callahan has been trying his best to get Jax on the trampoline with him...Jax sometimes will jump with his brother, but more often answers "No!" when Cal asks him if he wants to jump. Last night, I heard Jax on the trampoline in his half singing, half yelling stimmy voice happily jumping on the trampoline. I have to say that I never expected the level of pure joy that his huge toy has brought my sons. It's a pain in the butt to move when mowing the lawn and was almost impossible to put together, but it's proven to bring hours of fun to both boys.

Today the kids had a great time at the lake with grandma & grandpa. Jackson especially enjoyed the "fast" boat ride, complete with water splashing up on the deck of the boat. Though he was at first obsessed with NOT going back to the house; insistent on staying out on the lake [definitely a moment when autism stole the joy from something for him]. Callahan caught his first fish and got to experience "driving" the boat. He was particularly proud of himself and we were proud of him too!

Faith & quiet whispers from God

2010-08-29T18:01:00.000-07:00

Faith: a small word with big meaning.
I sometimes struggle with it; a guilt complex arises in me. Perhaps it's the devil on my shoulder whispering, "with enough faith your son would be healed from the demons of autism."
Last Sunday in church, we had a guest speaker, who eluded to just that: "the faith of a little seed can work miracles. It made the blind man see; the lame walk." It made my heart ache and my soul feel empty. Do I lack the faith to heal my son? Would he be "whole" if I prayed more? Would he be "normal" if my faith were greater? I cannot believe that to be true. Instead, I believe that God has a perfect plan for my son. A plan full or purpose and importance. The angel on my should whispers a reminder: "be still and know I am God."

And then, God steps in.
God knows when I need a reminder. He knows when my heart needs healing; He whispers to me and I know.

When I picked up Jax from school Friday afternoon I had a moment to talk to the mother of another child with autism. This child and Jackson share a gym period. Last week, the teacher was excited that the other boy used "I" with Jackson. His mother and I are getting to know each other better and Friday afternoon she was telling me how her son asked for shoes "like Jackson". Her son wanted to wear tennis shoes in gym like Jackson. She was thrilled and excited to tell me this accomplishment. [He hadn't worn "tie" shoes in years]. I was excited too. I know how "little" things can be really big things. As I left the school with Jax that afternoon, I heard whispers from God: "this is his purpose, here is his witness; be still and know I am God."

Just a gentle reminder: my son is perfect in God's eyes. His life is full of purpose. I am working on remembering that.

Lazy, Hazy Days of Summer

2010-08-17T16:52:00.000-07:00

Our family strolled into August; we had no agenda or commitments beyond our vacation and I looked forward to a couple of weeks filled with sleeping late and pajama days. Jackson so appreciated the laid back, no agenda days, though lately he's ever so aware that the carefree days are coming to an end and school will start very soon. Though I attempted to throw in a few "when Cal goes to first grade" comments and I dragged him to the school for registration, I didn't overtly talk about school with him and yet, he seems acutely aware of the dreaded "s" word.

I start back to work tomorrow and made myself sit down here to record some of the more memorable moments of the past few weeks:
Sesame Place was amazing, it always is. Jackson was so comfortable and happy, I felt my heart growing inside me. Callahan was so patient and sweet, almost indulging his brother's love of the muppets. Cal tried for 3 days to win at one of the impossible carnival style games to get Jackson a HUGE Elmo. On our last day in the park, he managed to "win" a big Elmo for his brother. I sooo wish I'd had a camera to video him as he walked through the park to meet Dan & Jax. He held the Elmo down at his side, he didn't want anyone to think it belonged to him. He carried himself in a macho-cool style, and still he wanted to be certain Jackson knew that HE won it for him. So as Dan & Jax exited the Lazy River ride, Cal made Elmo "wave" hello to Jax. Cal proudly tells how Jackson jumped out of his tube and ran through the water to get to Cal and Elmo. It was heartwarming and a memory I'll cherish.

Another fabulous brother moment came in the time they spent on the trampoline together. During our road trip, Jackson watched Spiderman 3 several times. This renewed his love in his Spiderman costume and he would dress as red spiderman and jump on the trampoline with Callahan as the "evil" black spiderman. They would wrestle, laugh, and jump together playing "spiderman". Here are some photos of them:

Watching them play together was so fun, I'd catch myself spying on them out the window, hoping they wouldn't see. I still don't know how they could stand those costumes in the humid August heat, but I'm thankful for the memories!

The Children's Zoo is always a fun place to spend an afternoon, though sometimes with Jackson it can be trying. He can be rigid, and want to stick to his routine. We always start in Africa, with the skyride, the we check out the hyena's and lions before heading over to feed the giraffes. Last week, the giraffes weren't interested in the romaine lettuce...There were several people on the observation deck watching the giraffes, but none of them were coming our way. Well, Jackson wasn't going anywhere until he (we) fed a giraffe. The zoo worker told me to try putting the lettuce down low and maybe the baby giraffe would come over and feed. I said a quiet prayer and put my piece of lettuce down lower. Meanwhile, Jackson is yelling, "Come on giraffe, it's time to eat" and "Giraffe get over here". Thankfully, this didn't intimidate the young giraffe and she came over and ate the leafy lettuce. I've never been so happy to feed a giraffe!

The zoo also provided an arena for Jackson to learn to use his cell phone. He's had it for a year, and has no interest in phoning or texting anyone. He has learned to use the camera feature on it, taking several photos of the animals and his toys while at the zoo. It's a step in the right direction anyway...

One final summer memory, as Jackson is harassing me for his computer time. This summer Jackson was invited to a couple of co-ed parties and had a great time with his friends. He is so blessed to have an amazing group of peers who look out for him and make a point to include him. This means so much to us, and ultimately, I know it means so much to him.

Advances in Autism?

2010-07-19T15:32:00.000-07:00

The other day as I was channel surfing in the car, I caught the end of some financial advice Dave Ramsey was giving to a family regarding a special needs trust for their child with autism. The parent was considering rolling the college fund money over into a trust. Ramsey basically said to wait to set up the trust, dump money in a more liquid account because anything could happen in the next ten years with the advances they are making in autism.

Well that one gave me pause. ???

Just last week a family member contacted me to let me know her three year old son was recently diagnosed with autism. After I caught my breath, and cried with her, I referred her to some good resources and tried to give her hope. But I also got angry and cringed: shouldn't there be more answers now? Shouldn't we have a better therapy protocol? Shouldn't services be more readily available? Shouldn't families have far more hope?

It's been nearly a decade we've been pursuing what I've now come to label "quality of life" for Jackson. Most times, I feel like we're doing a pretty good job of it. Other times I feel like there is so much more we could be doing. A simple google search yields a wealth of approaches:

restrictive diets
holistic medicines
chelation
hyperbaric chamber therapy
vision therapy
stem cell transfusions
therapy after therapy after therapy
The one thing they all have in common is cost. Don't get me wrong, I'd sell everything I've got, short of my soul to extinguish this demon. Unfortunately, there is no magic bullet, no wonder cure. Which leaves me feeling empty, though not hopeless.

Generally, I feel like we're making good choices for him; helping him be the best he can be. I do have days when the google searches haunt me and I wonder if what I'm doing is right or enough. I have other days when I am angry and frustrated; still others when I am full of hope and touched by my son's gentle spirit.

Another Milestone

2010-07-13T16:52:00.000-07:00

Last week Jackson went to a friends birthday party. Shyenne turned 13 and had more than a dozen kids over to celebrate. It happened to be the same night of our annual family party, so I made arrangements for Jackson to go with the help of a high school friend.
At first, he was hesitant and unsure. He didn't want to go at all:
"No party. I will just stay home."
Well, I'm all about pushing his limits and having him try new things, so I pushed him. I reassured him over and over. We talked about the sequence: first mom will take you and Micheal, next you will swim at Shyenne's and sing happy birthday, then mom will pick you up. Kid you not, we went through this litany over a dozen times.
When we got in the car, we repeated this litany with Micheal still another half a dozen times until we got to the party. Once we were there, he was still unsure and needed more prompting, eventually he settled down and I drove off...with tears in my eyes. I watched in the rear view mirror as he pushed another boy into the pond off the pier.
I waited anxiously for an update: would he want to come home early? Would he be overwhelmed by everything? Would the dog freak him out [I hadn't prepared him for the dog]? Would he have a meltdown? I sent a text for an update and learned he was in his element and enjoying himself.
In the end he had a great time. He pushed more kids off the pier, ate a sufficient amount of junk food and even got used to the dog. The party gave Jackson another opportunity to grow, another chance to overcome obstacles and for this I am ever so grateful.

Summer Break

2010-06-30T10:56:00.000-07:00

June has been such a busy month for us! Baseball, the end of the school year and family visiting. Change in routine is always hard for Jackson, though he had fun at Turtle Days and enjoyed his "Survivor" party, all of it added to the mixed up routine.
I've found myself under an unusual amount of stress lately too, and it dawned on me that I am equipt with some coping abilities that my son lacks. He isn't able to filter, prioritize or ignore like I am. With him it isn't sink or swim; it's more like tread water until someone throws me a lifejacket.

Using that frame of reference, I try to be patient and reassure him. I'd like to say I'm doing well with that, but alas, I'm not. My abilty to cope and adapt is being pushed beyond my limits, I can only imagine what it's like for him.
And this gives me even more appreciation for my son and how he approaches life. He's thrown in, and has to survive the waves. Sometimes, he adapts quickly and others, he struggles to find his way...

Outta the park!

2010-06-25T06:28:00.000-07:00

I haven't written here yet about Jackson's "homerun". Here is the letter I wrote to the editor of the local paper (thanks momma, for suggesting I share it here!):

Dear Editor,

Jackson just finished his second season as a "bat boy" for the major boys team Egolfs IGA. A simple cheers and thank you hardly seem enough for his team mates and coaches. Doug Brown didn't hesitate to include him on the team again this year. Nick Brandt and Kevin Smallwood tolerated his "teasing" and kept him safe in the dugout. Tony Nash pitched to him in the batting cage on more than one occasion and made sure he was included in the "good game" ritual at the end of each game. All of the young men on this team showed him compassion and engaged him in the dugout and at the park. From them, he learned the fine art of spitting sunflower seeds and the "rally" cry. On any given night, Jackson couldn't wait to ride his bike to the park for a night of baseball, complete with snacks from the concession stand.

During the final game of the regular season, the coaches and players of the Sterling Water team included Jackson in the final inning--taking the field to allow him an "at bat" after a tough loss to the Egolfs team. The boys on this team gave up errors allowing a short hit up the first base line to become a homerun. The cheers from the crowd created an atmosphere charged with celebration, acceptance, and love; and brought a special kid another opportunity to be included. As parents, we are again humbled by the attitude of this amazing town we call home. It is difficult to put into words how much it means to us.

We also extend kudos and thanks to girls major coach Dan Krill and the young ladies on the Shambaugh & Sons team who included a bat girl on their team this year. These girls demonstrated that the acceptance and inclusion knows no limits.

The Youth League gave two kids experiences that will help them grow and become more confident in their everyday interactions. The rest of the world could learn a lot from this small town with a big heart!

Sincerely,

Dan & Heather Ostrowski

Nothing like life in a small town!

"I can breathe in a small town"

2010-04-28T12:09:00.000-07:00

There is something magic about small towns. I grew up in small town, Indiana. When I was about 15 John Cougar sang "Small Town" on the radio. I loved the song, but hated living in a small town and just couldn't wait to get outta dodge. Life has a funny way of coming full circle for me. Here I am in a small town; marveling at the wonder of small town ways.

Jackson is "playing" baseball again this spring. He's officially a "bat boy", but he rarely gets a bat. He loves sitting in the dugout with his team, eating sunflower seeds and waiting for the 4th inning so he can play on the playground. He faithfully returns to the diamond to say "good game" and listen to the team meeting at the end of the game. This spring he's even interested in batting and has hit a couple of times during batting practice. There is a great joy for me in watching him interact with the other boys. We get something back that autism once stole away.

Earlier this spring, the mom of girl with autism asked me about the possibility of her being a "bat girl". I was thrilled last week to see her in the dugout in her uniform--so proud--with a smile that would light up the night. I ran into her mom, proudly toting her camera taking pictures. Later I saw her coach at the park and stopped him to say thanks. Little things like being a part of a team mean so much. This coach said he was happy to have her, "it's not a big deal." Oh, but it is a big deal. Opportunities like this aren't always available to kids like mine, making me all the more grateful when there is one.

I bet your wondering what all of this has to do with Mellencamps' "Small Town"...
There is magic in this small town. It's a place where kids like Jackson are included and embraced. It's a place where moms like me have the chance to see special kids do "normal" things. It's a place where everybody knows everybody else, where you know all the parents are looking after all the kids. It's a place where we cheer for the team and take walks to get ice cream. It's a place God put me for a reason...though I am certain my 15 year old self would think I am so not cool.

Vacation Memories

2010-04-08T12:34:00.000-07:00

Spring break took us to Treasure Island, Florida outside Tampa. We had gorgeous weather, a beach that went on for miles, two heated pools and a hot tub. The perfect equation for relaxation in our family!

Jackson had a fabulous time, as the water is therapeutic for him; though he was a bit anxious, needing to know what was next and to be reassured often. The trip started in Indy at the airport, where Jax couldn't wait to get on the plane. He isn't the most patient kid in the world, but once we got on the plane, he calmed down significantly. Jackson loves to fly--he takes in the whole experience. This flight was especially memorable as about an hour into the flight, he turned to me and said, "Isn't flying wonderful mom". At that moment, I knew the money we spent on the whole vacation was worth it. Yes, flying is wonderful and even more so, when my son is able to give voice to those words!

The boys all enjoyed the ocean waves and each visit to the beach Jax had to write our names in the sand...
Here are a few photos from our trip:

The experience of vacation builds schema for Jax. Today, as I'm putting away laundry and cleaning up around the house, I notice him in the toy room with the vintage fisher price little people plane, taxi and Sesame Street characters. First Bert and Ernie rode in the taxi to the plane, climbed the stairs and "get on the plane". Then Big Bird, Snuffy, and Grover joined them. When I asked him where they were going he said "to the hotel". The autism gods took a hit today: my son is playing pretend, using his schema to play with little people. Triumph...

Confirmation

2010-03-21T13:03:00.000-07:00

Jax is going through confirmation classes at church. It's definitely a stretch for him. Faith is so abstract and he is so concrete; it's an act of faith just pushing him to participate in class. I know that he is "learning" and growing by participating, and I am once again humbled and grateful for this amazing place we live. A place where a friend from church didn't hesitate when he was asked to be Jackson's mentor and walk the journey with him; and where his peers again support and encourage him. A few weeks ago, we went to Noblesville for a confirmation rally, Jax surprised us with his endurance and ability to go with the flow that day. Absolutely, his peers make a difference for him, and he really wants to be with them, do what they do...still something that amazes me given the autism.

As part of the course last week, the kids were each given $5 and challenged to use it to support a mission...mission here was broadly defined: an animal shelter, food bank, anything that would be considered supporting God's work in the world. Today, the kids had to report on how they chose to spend the $5 designated for missions. I was so proud of the ideas they shared: a few bought bibles to share on the mission trip coming up on spring break, others supported a local initiative for young moms. Jax donated his money toward another girl in the group who is walking next weekend in DC to raise funds for epilepsy. One of the kids in the group gave his $5 to Jackson "To buy an educational toy or game or something". Talk about touching my heart. God has a purpose and a plan and so much to teach all of us through Jax. I am doing my best to support that plan; and trying to enjoy the ride...

Autism Experts

2010-03-13T06:59:00.000-08:00

I just returned from a two day workshop in Bloomington to finish my "autism team training" for work. Being a member of the team required 6 days of training in Bloomington, and last spring when my boss asked me to be a part of it, I couldn't say no. So, I got to spend several days in B-town, "learning" more about autism [as if living with it 24-7 isn't enough].

During this training I listened to people who have made a conscious choice to learn more about autism; to spend time with families struggling to make sense of the disease. Honestly, these are some amazing professionals, who got into this long before it was an "epidemic" with motives that are pure and heartwarming. They live and breathe autism, and don't have too. They have come to love, cherish and celebrate the people who are affected by this mysterious [and frustrating] disability. They are my heroes for so many reasons.

First, they choose to live autism. Autism is so many [ugly] things and I can honestly say, I would never choose to expose myself to it. They are fighting the good fight for all of us not given a choice; and they do it with passion. I am humbled by it.

Next, they validate me (probably this should be first). I listened to them speak passionately and they make me feel like I'm doing the right things for my son. My mantra has been "it's all about quality of life". The points they made reiterate that importance. These experts emphasized the importance of social skills and relationships. They urge parents to consider what life will look like for kids 10, 20 years down the road. I am SO there...so there.

Also, these experts say, "there is no magic cure; no simple solution". Amen to that. It may take several therapies, a combination of approaches, a multi-faceted solution. And even then, your kid may still suffer from the demons. Living and "dealing"with autism requires outside the box thinking; it's like running a marathon uphill...

Finally, these experts find a way to appreciate what makes these kids just like any other kid (and what makes them drastically different). They find ways to connect and laugh with kids. They find ways to solve problems and create solutions for families. They give me hope.

And sometimes, hope is all I have left....

Dance!

2010-03-05T14:45:00.000-08:00

Last Friday night Jax attended his first school dance; true to his 12 year old form, he went grudgingly (though most boys aren't interested in dancing and Jax just wasn't interested in returning to the school for anything!) With a bribe and a prayer, we headed off to the school. Initially, he was just happy to get his treat from the concession stand, then he wandered a bit, taking it all in. He sat down at a table in the commons to eat his candy and I managed to persuade him to check out the music coming from the gym...

Once he spotted the strobe lights, he was off. He had such a good time--watching those lights, running back and forth in the gym. At times, he looked like any other kid in there: he joined in the "Cha-Cha shuffle" after hanging back to see what the song was all about, and when he took a break from his "dancing" he sat on a mat at the other end of the gym (grown up enough to not want to just hang out with mom)!

There were also times he was so obviously different that my heart hurt. I've learned to come to terms with that; he was having a blast and I thanked God for another piece of happiness, another "rite of passage" he can enjoy. I also thanked God for the girls who engaged him, tried to get him to dance with them and for the kids who let him jump around in the middle of them.

One Junior High dance conquered; more to come! [I'm ever so grateful to his social studies teacher for forwarding me these photos of him!]

Autism Presentation

2010-02-13T09:28:00.000-08:00

Last month I had the privilege of presenting at a national conference for educators on two of the topics I'm most passionate about: Autism and Early Literacy. I don't mind public speaking and talking about our journey sometimes gives meaning to the madness. Making the speech forced me to think through some of our biggest challenges with Jackson, but also helped me to recognize some of his greatest accomplishments. I reflected on what autism has taken and the perspective I have gained in its wake. I never imagined that this would be the course his life would take, and still ponder how the direction may shift and change over time. There is one thing for certain, we'll continue to stretch him to be his best and support him as he tries new things...

Elephants, Tigers & camels?

2010-01-23T10:29:00.000-08:00

Seven years ago, I was 8 months pregnant with Callahan, and we decided to take Jax to the circus with another family. It was probably one of my lowest points in parenthood. Here was this precious 5 year old boy who literally, just could not filter all the sensory input the show offered. He did his best, and he so obviously wanted to be there, but he just was not able to assimilate all the sights and sounds of the circus. He would leave the arena and watch from the hallway, peeking out over the steps into the lights and sounds, clearly distraught. He was torn between wanting to see the show, but knowing it was more than he could handle. We ended up leaving; me carrying an upset tearful boy away from the coliseum, fighting back tears myself. It was a heartbreaking painful reminder of just how not "normal" our family was.

Fast forward, 6 years...Jax goes to the circus with his 5th grade class, (dad in tow)and is able to filter and enjoy all the chaos that a circus has to offer. We were pleased beyond words that, finally, our son could enjoy a childhood treasure: the circus.

Armed with that experience under our belts, we bought tickets to the circus and went as a family last night. Jax seemed a bit confused at first, referencing going with 'the kids', but quickly adapted to a "family fun night". Once we got our seats, Jax began a litany "elephants, tigers, and camels". I wondered where he got the idea that there would be camels at the circus. He repeated his litany at least twenty times through out the show, he had to be sure he wouldn't miss anything. We got our popcorn and overpriced dippin' dots and souvenirs and we sat together as a family and marveled at the circus. Quietly, inside, I marveled at my son. A boy who doesn't realize all that he has to work against; who doesn't comprehend the why's and how's of the world. A boy who has courage to keep trying and stretching himself to new experiences.

We got a piece of that figurative puzzle back last night. We were able to enjoy the circus as a family in a "normal" way we at one time thought never possible.

Lazer Tag

2010-01-16T09:06:00.001-08:00

Last night we went with the Youth Group to Lazer tag. It was a lot of fun, Jax really enjoyed "playing". He generally just wandered around the arena, shooting at random things, and enjoyed the sensory blast that used to overwhelm him. I am happy that he had a good time, but it's a little bittersweet. It's almost painful to watch him; so unaware of the point of the game. I know that I should be content with his joy, but I'm just not. It made his autism so evident, so in my face that at times I just wanted to cry. One step forward, two steps back, that's how it kinda goes isn't it?

He did have a lot of fun, and enjoyed himself. It didn't faze him one bit, and in a way it's a blessing that he doesn't know what he doesn't know. I just wish it didn't break my heart to watch it happen.

And, once again, the kids he's grown up with stepped up and had his back. We went to IHOP for "breakfast" afterward. The kids were grouping up, getting tables. When Jax became aware of what was happening he asked for one of his friends (more than one time--in his own way by repeating his name). This sweet, kind kid made room for us in his group like it was no big deal. He may never know what a big deal it is to me.

Little Things

2009-12-15T15:07:00.000-08:00

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

2009-12-09T18:03:00.001-08:00

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

2009-11-01T16:43:00.000-08:00

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

2009-10-31T17:33:00.000-07:00

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"

2009-10-22T16:54:00.001-07:00

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

2009-10-14T17:19:00.000-07:00

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

2009-10-12T12:59:00.000-07:00

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

2009-10-10T18:22:00.001-07:00

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

2009-09-27T17:59:00.000-07:00

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

2009-08-30T17:44:00.000-07:00

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

2009-08-19T18:03:00.000-07:00

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

2009-08-12T05:54:00.001-07:00

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 ;)

2009-08-03T10:36:00.000-07:00

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...

2009-07-29T12:00:00.000-07:00

...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"

2009-07-15T16:41:00.000-07:00

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

2009-06-16T11:44:00.000-07:00

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

2009-06-08T19:18:00.001-07:00

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

2009-05-19T17:28:00.001-07:00

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

2009-05-10T17:21:00.000-07:00

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

2009-04-30T08:45:00.000-07:00

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

2009-04-28T17:58:00.000-07:00

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

2009-04-16T18:36:00.000-07:00

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

2009-04-08T07:32:00.000-07:00

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

2009-03-22T18:40:00.000-07:00

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

2009-03-19T18:33:00.000-07:00

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"

2009-03-17T18:01:00.000-07:00

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

2009-03-16T13:51:00.000-07:00

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

2009-03-15T17:51:00.001-07:00

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

2009-03-09T18:19:00.001-07:00

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

2009-02-05T17:45:00.001-08:00

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

2009-01-30T06:26:00.000-08:00

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

2009-01-18T09:29:00.000-08:00

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!

2009-01-13T14:12:00.000-08:00

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

2009-01-10T08:36:00.000-08:00

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

2009-01-03T17:23:00.000-08:00

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!

2009-01-01T17:39:00.000-08:00

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!

This one made me think...

2008-12-31T08:53:00.000-08:00

I ran across this article today about a journalist (Lenore Skenazy) who left her 9 year old in Bloomingdale's in New York City to find his way home via subway alone. [Evidently the kid had been begging to make his way home from anywhere for months]. At first, my response is, whoa! not sure that I'd try that! But upon reflection, I'm thinking, here is a kid who has grown up riding the subway, and will probably know how to get home on his own. [You can read the story here: http://www.nysun.com/opinion/why-i-let-my-9-year-old-ride-subway-alone/73976/ ]. He did, get home safe and sound, by the way.

Of course, as I usually do, I framed this as a parent of a child with autism. It's thought provoking really.

What can my child do independently?
How will I know if I don't let him try?
What am I willing to risk?
Do I know what he can hande?

Obviously, I wouldn't leave him to his own devices in New York City, but I am striving to find the balance. The right amount of independence for him with the appropriate amount of control and support. Am I too controlling? Probably. Do I give him a variety of options? I try. Still, I'm left thinking about this...wondering just how dangerous life can be in Churubusco, Indiana!

"My mom is cool!"

2008-12-30T18:43:00.000-08:00

Tonight, in the van on the way home from running errands, Jackson busts out in this rap:

"I love my mom, my mom is really cool. But now it's time for having fun in school."

Of course, I was thinking how sweet it was and feeling a bit smug. Dan prompted him to change the verse to include "dad". Then Cal informs us that Jax learned this from Sid the Science Kid on PBS. Well, it's still very sweet, right? ;)

Aha!

2008-12-27T07:52:00.001-08:00

In the past couple of months, Jax has been making 'random' comments about 'bonen'...we have had no idea what exactly he was talking about. The 'conversations would go something like this:

J: "you go to Bonen"
M: "where do you want to go?"
J: "to Bonen"
M: "where is Bonen"
J: "Wubbzy wants to go to Bonen"
M: "What will Wubbzy do?"
J: "Go to Bonen"

It was more than a bit frustrating! Yesterday, Jackson is on the computer; his favorite sites are pbskids and YouTube. While on the pbskids site, he linked to the Boeing website. Yep, Boeing as in, the big airplanes. In fact, today when I went to log on, he had 12 windows open, all of them for Boeing jets. Now I know, when he talks about Bonen, he's referring to Boeing and really just wants to fly on a plane...

As the Super Slueths would say, "Another mystery is history!"

Holiday Hustle

2008-12-25T16:56:00.000-08:00

Well, we have 5 down and 2 to go!
Jackson is actually doing remarkably well.
This morning he was thrilled to finally get Horton Hears a Who from Santa. Of course, he was less into the DVD and more about the plush Horton beanie baby that came with it.
All in all the day was a big success and he handled the to and fro quite well...probably better than I did (lol).
This evening he's enjoying the drum set we got for him and his brother and coloring the Super Why pages he got in one of his gifts. All is right with the world, for now...

hmmm.....

2008-12-22T18:21:00.001-08:00

Well, I know that Jackson is thrilled to be out of school, but I'm not so sure myself...
The weather has been yucky and we've all been couped up or hustling about. Jackson's anxiety is growing and we aren't even four days into break....I'm certain the holiday has something to do with it, but I'm growing weary of encouraging him...and reminding him what comes next. He's such a creature of habit.

We went for haircuts today. That's a bright spot to celebrate, as I remember a time when we literally had to hold him down for a haircut. Now, he willingly sits in the chair and patiently lets the barber (who is wonderfully patient himself), clipper cut his hair. I need to remind myself of the accomplishments when I'm bogged down by the monotony of it all.

More to come I'm sure....I'm thinking I ought to go back and re-read posts from this time last year...

Kermit's Christmas Show

2008-12-18T17:24:00.000-08:00

Last night, the whole family snuggled in to watch the Muppets Christmas show. Jackson absolutely loved it! The beginning of the show had Scooter, Rizzo, Gonzo and Kermit at a post office, and Jackson was really excited saying, "Post Office Box 166" which, of course, is his PO box #. How wonderful to have him associate the post office emblem with his mail. I'm so glad we spent the money for that box and I'm especially grateful to those relatives who keep him excited about his mail (Aunty Trish, Great-Aunt Judy and Grandma, among others). The show was cute and included some musical numbers that Jackson enjoyed...

We had a fun night watching the program, but then had trouble getting the boys to bed...

Just one more week 'til Christmas, and if the weather comes in like it's predicted, I'm guessing our Winter Break will start a day early. [Of course, since I published that, I've jinxed it for sure!]

Komet Hockey!!!

2008-12-14T16:38:00.000-08:00

Dan got tickets to last night's Komet game at work. I figured we'd go and see part of the game and get home at a decent hour. Well, Jackson decided we weren't leaving until the absolute end of the game. Never mind that the Komets were down 2 goals with less than 2 minutes to go. Never mind that we had church in the morning and it was past 10pm. Never mind that we'd have to fight the crowd to get out of the parking lot....

Actually, I was happy to stay with him. It warms my heart to have him enjoy something as simple as a hockey game. It's a gift--we can enjoy the game just like most families with a few quirky exceptions. [One being his connection with the older gentlemen sitting behind us, whom he high-fived like he knew him?] We all had a great time, though Cal was ready to come home before the game was over. Even though the Komets lost, it was a win for us!

Christopher Columbus

2008-12-08T17:59:00.000-08:00

Jackson just completed his 3 projects about an explorer. We chose Columbus because Jackson was born on Columbus Day (and I knew I could modify the assignment and make it work for Columbus). I'm' really proud of how it turn out...I should have taken a picture of the Santa Maria diagram he did. He also created a short timeline of Columbus's first sailing. His third project was a very brief biography in book form (with picture to help him "read" the book). I'm really excited that he's learning some grade level content this year...though it is really modified, I'm excited that his teacher is willing to work with us and help expose him to some new concepts!

Oh Christmas Tree!

2008-12-07T06:41:00.000-08:00

I really enjoy putting the tree up each year...especially since Jackson has come to love it so much. When he was a baby we started buying a Hallmark series of ornaments: NHL hockey players...I thought it was a great way for him to have his "own" ornaments, unfortunately, Hallmark stopped the series after 5 players (guess they couldn't come up with more than 5?) This year was especially fun, both boys were VERY excited about the ornaments and the tree. (Cal was worried about who had more ornaments...) It was all fun and good until the cat knocked the tree down!

Here are a couple of photos:

Cal puts the Star on top; Jack makes sure Elmo is just right...

Bedtime

2008-12-02T15:25:00.000-08:00

Jackson hates going to bed lately. He greatly prefers, "movie night" which means he gets to sleep on the floor and watch a movie under his bed. [Cal likes to have movie night too]. We've been putting them to bed around 8:30...is that too early for an 11 year old? I guess I don't know... He generally comes out and hangs out for a few minutes on the couch, then goes to bed--though not with out protest.

Holiday Lights

2008-11-28T05:05:00.000-08:00

Last night we went down town to see the cool Santa Light display that is hung on the bank building every year. We also went through the Fantasy of Lights display. Jackson had such a wonderful time...it's so cool when he gets excited about a "tradition". Driving through the Fantasy of Lights he did his usual play by play--"Look at the Pizza man" "Look at the Mastodon" "Here comes Woody" It's nice for us to have those words and know that he's enjoying himself...

Child's Play

2008-11-23T14:54:00.000-08:00

Every now and then, the boys start playing together...it's rare, but heartwarming when it happens. The other night, Jax reached out to Cal and initiated wrestling (Cal's favorite thing to do!) Right now, they're jumping on my bed together (which I totally shouldn't let them do, but will anyway)...

Church Directory Pictures

2008-11-21T23:37:00.000-08:00

We had our church directory pictures tonight. They really did NOT go well...I don't know if it was the flashing of the lights or the sounds or what, but Jax was freaking out....we got there a few minutes early and he was cool, peeking in at the other family getting photos taken. He seemed fine to leave "pirate big bird" in the chair watching. THEN, the photographer started posing us and after the first shot snapped, he really lost it...we struggled through 3 more shots which just got progressively worse and then I called it quits. I refuse to torture my son and he was obviously distressed. He was stimming and going into meltdown mode....
He wasn't distressed until they started shooting, so all I can figure is it was the lights or something.... The photographer was of minimal help...didn't try to engage him or anything, he acted like he didn't know what to do.
This is our 4th time taking church photos and tonight was a bad as the first time we did it when he was just over 2...that time was a debacle he was literally terrified...He did much better at 6....and even better at 8. Actually, last time we were able to get pictures of the boys together and I dropped $150 on Olan Mills photos....
I was actually crying reviewing the proofs...he looked scared and pained in the pics....Dan had left with the boys to pick up a pizza and I was left with the OM salesman. I wasn't ready for how bad they looked...the salesman was a retired Free Methodist Minister from Chicago...he was very, very kind hearted and actually prayed with me for Jax which I never expected from an OM salesman (if you've ever done these directories you know they push the hard sell...) Well, tonight was a reminder that autism is a big part of our family...and I've got the insomnia to prove it...

Showers!

2008-11-13T16:18:00.000-08:00

I don't know if it's the colder weather, or just Jackson seeking sensory input, but lately he's taking 3 or 4 showers a day! Using a new towel each time--not to mention the hot water! I really need to work on finding more sensory input for him...especially now that he's stuck inside so much more...and he's hesitant in the swing we hung in the garage since the last one broke while he was swinging in it! More to come...

Reading!

2008-11-10T18:10:00.000-08:00

This year, Jackson's teacher is doing Book-It. It's kind of nice to have that reminder hanging on the fridge that we need to get in at least 10 minutes a night...which with Jackson that can be especially tricky, considering that he reads very simple books that take less than one minute to read...
Well, tonight I brought some books home from school, just to add variety to what we already have (and by the way have been reading for 3 years!) I was very pleased with how well he did. In fact, tonight after reading some of the "new" books, he wanted to sit and read the No David!books together. He's been "reading" these books for years, but it's always a joy to hear him read them...he has great expression!

There was a time I wasn't sure he'd learn to read...now I'm certain that he's going to get there, but his journey toward literacy has been more like a marathon!!!

Alex's Birthday

2008-11-09T16:08:00.000-08:00

Saturday we celebrate Alex's birthday. Dan brought Jackson later, because we felt like being there too long would be stressful. Overall, we were so very pleased with how he did...he played outside (alongside) the little boys and seemed to really enjoy it.

He also had a great time going to the movies to watch Madagascar 2. He loved the first movie and we were hopeful he'd enjoy going to the theatre. It was a big success. Another example of getting back a little bit of what autism took away. There was a time that a theatre was just too overwhelming for him, too much stimulus. But not this weekend. He sat between Dan & I and just enjoyed the movie. Tonight, happiness is being able to go to the movies as a family!

Trick or Treat

2008-11-02T18:00:00.000-08:00

Friday night we took the boys trick or treating. Usually there are a dozen or so houses participating in our neighborhood area and we don't walk more than a few blocks.
This year, the participants were scarce, I don't know if it was due to the football game or what, but we ended up walking up town, to the fire station and beyond. Jackson had a great time trick or treating and it truly felt like a small victory to me.

It doesn't seem like it was that long ago, that I bought him the $40 Buzz Lightyear Costume at Disney only to have him freak out and not want to wear it or have ANYTHING to do with Halloween. I'm pretty sure that was the year he turned 2...he slept through Halloween the year he was 3. Finally the year he was 4, we dressed him up as a cowboy and he tolerated it a bit more....a couple of years ago, he rode his 2 wheeler dressed as kermit the frog...and of course this year he's thrilled to be Spiderman!

All this rambling really boils down to how wonderful it was for us to be able to enjoy the evening as a family. Everyone had a good time, and it's now a happy memory!

Schedules!

2008-10-30T11:37:00.000-07:00

We've been totally out of routine lately! Between 'Busco's parent/teacher and ours, let's just say, Jackson hasn't known which way is up! He's actually adjusted amazingly well and just had one major meltdown...when he did, I was surprised to realize how long it had been since he'd had a full blown meltdown.

I'm ready for the break and hoping he adjusts...
We'll trick or treat tomorrow night....

Trick or Treat at School

2008-10-23T16:30:00.001-07:00

We just returned from the safe trick or treat at school.
I decided to go at the last minute when Cal came outside in his Power Ranger costume as I was raking leaves.
We didn't emphasize we'd be going to the "school". Jackson loves being Spiderman, so he put on his costume and walked up to school!
Lucky for us, we had friends closer to the front of the line and Jackson did great...I'm very proud of him. He actually remembered doing this in the past (we've only been one other time because of how much he HATES going back up to school) and wanted to "go this way". Asking to go to the main corridor of the school. That was cool too! :)

Great Photos!

2008-10-19T18:21:00.000-07:00

Jackson is very difficult to photograph. We have many pics of him that just seem unnatural--almost pained. So, I hired a photographer to meet us at the local park and just get natural shots of both boys. Here are some of the best:

There are many more...but these are definitely my favorites!

Jackson Turns 11!

2008-10-16T14:55:00.000-07:00

Here are photos from his skating party:

All the kids had a great time and I'm so glad we decided to go ahead and have his party at the skating rink. He really had fun skating and now Callahan has decided that he's going to have his party at the skating rink too!

This day was coming

2008-10-08T17:21:00.001-07:00

Monday at recess there were some girls making fun of Jackson...
Actually they included the other autistic child in his class in the charade by having her say, "Jackson is my boyfriend", telling Jackson to hug her, asking Jackson to say, "I love ---". I guess this is typical kid stuff and really it didn't bother me a whole lot, largely because Jackson's guardian angel (and my little spy) Paige quickly told the recess teacher and it stopped.

These "mean girls" have been appropriately handled at the school (I think). But what makes me crazy mad is that now they're out for Paige! Honestly, for me that is even worse than what they did to Jackson.

Jackson doesn't "get" it. When they were making fun of him, it was funny to them, and they were laughing at his expense, but (Thank God) Jackson didn't understand or have his feelings hurt.

I'm really hoping this all just goes away and these girls cut the crap...time will tell.

Problem Solving

2008-10-03T19:42:00.000-07:00

Just when I'm at my wits end with Jackson he manages to do something that surprises me and I marvel at his ability to cope...
We're getting ready to run out and pick up a pizza and I'm trying to get the boys out of the house....Jackson cannot find both his tennis shoes, so he took off his socks and put on a pair of sandals...Wow! It seems like such a small thing, but for him, it's BIG!

Tonight at the football game, friends of ours were commenting on how much more Jackson is talking and engaging others. I sometimes get lost in everyday life, and don't realize the strides he's making. Hearing others voice their observations of his gains somehow makes them real....

UGH!

2008-10-02T12:38:00.000-07:00

Jackson really has not concept of time...he's not at all patient. It's something about him that gets on my last nerve. He just doesn't "get" it and it's a great cause for anxiety to him....