Unexpected

Who is important to you? When the world stops turning who do you want next to you?  Who shares your quiet place?  Recently, someone important to me asked me why I haven't posted here in so long, why I quit writing.  My answer was simple and complex.  This space has been about sharing the joy and triumphs.  I usually avoid the difficult and ugly, I prefer the "glass half full" approach to life.

I have pondered that question and this space for a couple of weeks.

So....here I am again, to share the joys and triumphs (and maybe a couple of true heartbreaks).

17.  My boy is 17.  Adulthood looms over us, just beyond the horizon  It's very dark, like just before dawn.  Something inspiring and wonderful is held in that dawn. Something beautiful and original and magnificent.  I cannot yet make out what it is, beyond that horizon, beyond this darkness, in the great unknown. I am going to cling to the hope and promise of good. 17 is awkward, lanky, and hungry.  17 is humor and tears.  17 is unexpected.

So much has happened that brings us here.  I never expected to be a part of the statistic, yet here I am, a divorced single mom with an autistic son.  (Dear New Warrior Mom:  Never say never.  Autism changes many things in life, and the silver bullet was unavoidable).  Adjusting to all that comes with divorce has been a challenge for Jackson.  He is handling it better than expected in some ways and worse in others.  We are all just taking it one day at a time.

Today, I celebrate Jax being voted on the junior prom court.  That is an unexpected triumph.  Literally, for years, I fought for him to be educated in our local school.  I badgered, I argued, I begged, and when that didn't work, I hired an advocate to fight for me.  AND WE WON.   We won and Jackson suddenly was safe and crossing that stage with his peers was finally a sure thing.   Those peers, those kids, have embraced and included and loved my son.  Those kids are the very reason I fought.  In a couple of weeks, Jackson will go to the prom.  He will dance and sing and laugh.  He will be happy.  He will be included.  He will be accepted.  WE WON.

WE WON and suddenly, those friends are growing up, driving cars, making college visits and taking the SAT.  WE WON and I forgot how much I lost, how much had been taken from me.  WE WON and for a glorious time, I could forget. I didn't consider what came after he crossed that stage.  Well, maybe I did consider it in vague terms, but nothing concrete.   It's dark here; it's always darkest before the dawn.  It's dark and I cannot see the future.  I know it does not include cars, or college visits.  I know his path looks different.  WE WON, but now I have to face the dawn alone.

If you know me, you know I am never truly alone.  God's plan for my imperfect son is perfect.  My plan is simple, cling to that hope and promise; try to relax and enjoy the ride.  Who matters to you?  Tell them, let them know you want to held them when the world stops turning...

14 Years

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

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!

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?

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"

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

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.