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.

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.

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?

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!

...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!

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.