Summer Advances

"The days are long and the years are short," and here we are.
Jackson crossed the stage with the same kids he started pre-school with, his graduation party was a huge success and he attended celebrations for several of his classmates.  It's almost August; many of his classmates are preparing for college life.  It's appropriate for me to pause, and reflect on all he has accomplished this summer; mostly to remind myself his journey continues, but also to encourage others walking a similar path.

Graduation happened.  It was REAL.  He  crossed the stage, he turned his tassel, he even posed for pictures.  He happily signed his name to over 20 cards and personally delivered them to classmates at parties.  In most cases, that was all he wanted to do, but he did it.  I could go on and on about the group of kids he was blessed to grow up with...the fact that he was invited to over 20 parties gives an indication of the character of these young people.   We wish them all well.

This summer has held accomplishments unexpected...Jackson asked to help paint the laundry room.  Though his help slowed the process, together we painted that room and the paint that dripped on the trim or floor is a reminder to me that Jackson did his part.   He also helped shovel landscape rocks, install trim, and attempted to mow the lawn.  Thanks to Pokémon Go, he has taken the dog on walks and willingly gone on bike rides. :)

His weekly outings with a helper have built financial skills.  He knows denominations, is able to give correct amounts and is learning to check his change for accuracy.  These outings are also helping him make decisions about how he wants to spend his money and to understand that there are limits to what he can afford.  We are very grateful for the care and commitment of his helper.

Today, he went to a new dentist.  Jackson hates the dentist.  I hate the dentist. Who likes to go to the dentist?  Well, I gave him minimal warning that we were seeing a new dentist.  I know that too much warning makes him obsess and that isn't ever good.  Together, we walked into the new dentists office (he has seen a pediatric dentist since he was 7, at nearly 19 it was time to explore our options for an adult dentist).  I held my breath as I completed the paperwork and we waited his turn.  Lisa, the hygienist called him back and invited me to come along...as we got to the exam room I asked Jack if he wanted me to stay with him.  He said yes, and I sat on the edge of my chair watching my grown baby cooperate and handle a cleaning.  I kept waiting for him to lose it, he never did.  It was the first time he had his teeth polished.  Maybe next time, he will try an x-ray...

This post is all about triumph.  Things that seem impossible can be accomplished.  When you believe you've hit a plateau, press on.  If you feel like your child won't; hold onto hope...someday he will.  Jackson has taught me, when you least expect it, in a way you never imagined, autism loses and life wins.

On the Eve of Eighteen

    On the eve of eighteen....eighteen years ago, I waited for him.  He was a promise, a prayer, perfection.  He came into the world with ten fingers, ten toes, bright blue eyes, rosy cheeks; everything that makes a newborn a miracle.

   There was so much promise in the beginning.  He was everything I hoped he would be.  There was no cause for alarm, no sign of what as to come.  I consider how nice it would be to go back and enjoy that peace.  Soak in what I didn't know I should treasure.
   Someone pushed fast forward and suddenly here we are.
   On the eve of eighteen is a strange place to be, a purgatory of sorts.  For so long, all that mattered was getting him to commencement.  Giving him the opportunity to walk with his peers, the kids that grew up with him.  Most of the time, I didn't think much beyond that.  I didn't think about what crossing that stage really meant for his friends...for him.
    It's the eve of eighteen; suddenly I'm faced with a reality that breaks my heart.
    He isn't going to college.
    He won't drive a car.
    He can't manage his life independently.

   While others are stressed over SAT scores and college applications, I feel very isolated.
   Eighteen years ago, I could bond with new mothers over breastfeeding, sleepless nights, and mylicon drops.  I understood I would manage, because I had comrades.  I wasn't navigating foreign territory alone.  Ultimately, I did manage.  Infancy was overall a cheerful time.  I can still smell the newness of it all...I was taken with him.  Now, we are far from the norm.  The world lay ahead of him in a very different version.  It's colored with promise and darkened with unknown.

    On the eve of eighteen, I am still taken with him.  He doesn't talk back, break curfew, or shy away from affection.  He has a genuine heart and a gentle spirit.  I will do for him what I always have done.  Be his advocate, his voice, his support.  I'll take his hand and we'll follow this journey hoping we can conquer the future obstacles we have yet to see...

Ice Cream Run

       Ever had a memory leap out of your heart and roll down your cheeks? Tonight, I made a memory that sometime in the future will do just that.

     It's summertime, baseball season, a hectic time with  full schedule that is loosely knit.  It's a go with the flow, spur of the moment time of the year.  Tonight some good friends came over to deliver some furniture. (Yay me!)  The kids decided an ice cream run would be fun.  I didn't get to see them all hop in the car.  I didn't hear Parker offer to let Jackson ride in the front seat.  I didn't even see them drive off down to street.  It happened so fast, all of a sudden I missed it.

     We moms met the cool kids minutes later at the Magic Wand.  Everyone had some form of ice cream and we all enjoyed this summer ritual.  When we finished, the kids got up.  Jackson paused, and said, "Jackson's gonna ride in Paige's Jeep."  Very matter of fact.  Then, he followed them all to the car.

     This could have happened with any number of kids.  It's a very normal thing.  Kids go for ice cream, kids ride off together, kids laugh and sing in the car.   Kids do it all the time, most of you take it for granted.

     There is so much that I do not take for granted.  So much that makes my heart ache.  Tonight, Jack sang in the jeep.  His brother and friend had the presence of mind to record him for me.  Tonight he did something so normal that for just a moment, I could forget his limits.  I could forget what holds him.  I could forget the heartache.

     I know, I know.  There is so much he can do, many ways he is blessed, and much to celebrate.  I plan to celebrate, maybe with some ice cream.

Anticipation

"Patience is not the ability to wait, but how you act while your waiting." this quote was recently in my Twitter feed.  I think about time, patience, and anticipation.  How different each of their meanings for my son...

Time passes, time runs, time slips through my fingers.  Jackson has no sense of time.  In the moment, it means little to him.  He can ask about a special event a thousand times before it actually happens.  Lately, he is obsessed with going to the beach.  (My hypothesis is this is because we didn't go anywhere for spring break).  We are going to Destin in July with some good friends.  He asks daily about this vacation and we go through a litany of repetition something like this:
J: "We are going to the beach"  hesitates "with Paige and Parker" hesitates
Me:  "In July"
J:  "Should Ang go?  Should Rob go?"
Me:  "In July"

Seriously.
We go through this conversation everyday.  He has little concept of when July will be.

It's not that he doesn't have enough patience, it's that he has too much anticipation.  For me, anticipation is generally a good thing.  "I can't wait!"  How much of our lives do we wish away via anticipation?  Yet, here is my son.  My awkward, lanky, innocent boy, for whom anticipation is a nemesis.

Anticipation stole his magic at the happiest place on earth.
Anticipation suffocates his joy.
Anticipation snuffs his spirit.
It's like he is waiting for the sky to fall....

You know what?  I am gonna find a way to turn that around.  I am going to find a way to make it a smile that twinkles in his eyes.  I am going to find a way through sheer will. 

Ironically, anticipation is the name of the game with this kid.  I have to anticipate his move, know when the stress level is reaching the tipping point.  I have to be prepared with plans B, C, D, and E.  This has become such a habit for me, such a part of my being that it frustrates me when others cannot execute it.   Clearly, you have been around my child enough to notice when the flags are going up.   Do you not see the signs?  Do you choose to ignore them?  Are you that self-absorbed that you turn a blind eye tot them?

Well, this post is loosely knit.  Kind of a reflection of me right now..little focus, distracted,  and full of pieces that do not quite fit together.  I am rusty, give me time and this writing thing will improve...I just gave you something to look forward to....anticipation.

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?