Monday, December 27, 2010

birthdays, holidays and notes to mom

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.

Sunday, December 12, 2010

before autism...

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.

Monday, November 22, 2010

Dear God,

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?

Sunday, November 7, 2010

Mimi and Grandpa and the bells

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!

Sunday, October 31, 2010

...Happy

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...

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!

Tuesday, October 19, 2010

Just One Moment

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.

Wednesday, October 13, 2010

On Life and Afterlife...

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

Sunday, September 26, 2010

"Don't Cry Mom"

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.

Sunday, September 5, 2010

Just a random update

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!

Sunday, August 29, 2010

Faith & quiet whispers from God

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.

Tuesday, August 17, 2010

Lazy, Hazy Days of Summer


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.

Monday, July 19, 2010

Advances in Autism?

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.

Tuesday, July 13, 2010

Another Milestone

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.

Wednesday, June 30, 2010

Summer Break

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...

Friday, June 25, 2010

Outta the park!

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!

Wednesday, April 28, 2010

"I can breathe in a small town"

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.

Thursday, April 8, 2010

Vacation Memories


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...

Sunday, March 21, 2010

Confirmation

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...

Saturday, March 13, 2010

Autism Experts

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....

Friday, March 5, 2010

Dance!

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!]







Saturday, February 13, 2010

Autism Presentation

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...

Saturday, January 23, 2010

Elephants, Tigers & camels?

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.

Saturday, January 16, 2010

Lazer Tag

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.