Sunday, January 8, 2017

Autism in the raw

Do you have a New Year's Resolution?  Anything you want to change in your life? Have you set a goal for yourself?  My resolution is to stop being so hard on myself, admit when it hurts, and accept that sometimes, choosing grief is ok.  I am going to try to be more authentic and real.  So, tonight I am sharing those real, authentic, raw emotions.

Autism changed me. Sure, I tend to focus on the good, and emphasize the joy; sometimes, there is no getting around it.  The truth is autism is hard.

Autism is hard,,,,
when your baby is 3 and still unable to communicate his needs.
when he is 10 and still isn't reading functionally
when he is 19 and no where near ready for independent living

When that diagnosis came, I felt like it was something I could fix.  And then, I couldn't.  Now, I try to be realistic about my expectations and plan with reason. That doesn't make it easy, or hurt any less to watch his brother, peers, and cousins meet milestones he will never achieve.

Autism is hard....
on your marriage
on your friendships 
on your "typical" kids

There have been many casualties of autism in my life.  Certainly autism played a part in the unraveling of my marriage. Family dinners?  Are you kidding, there were times he wouldn't even eat, let alone sit at the table.  Coloring Easter eggs?  My younger son maybe got the chance to do it twice, same goes for carving pumpkins.  When you have a child with autism, many, many things are forgotten.  Many times we "don't sweat the small stuff."  Then there is the guilt and grief that fuels the parenting.  The balancing act, keeping my typical kid grounded while trying to compensate for all that he has lost; for being the big-little brother; for life being often dictated by the autism.

Autism is hard...
to explain to others who do not live it
to understand
to accept.

There are times I feel the judgement of others; like when we are checking out at the grocery and the clerk or people behind us in line star quizzically.  Or when I give in and just let him watch that YouTube video for the 100th time because I have no energy or patience left.  Or when he gets inappropriately loud and anxious in public (or anywhere).  As hard as I try, I cannot truly paint an accurate image for what daily life is like.  The struggle is very real.

This is the raw, unedited, authentic version. Are there blessings? Absolutely. Do I wallow?  I certainly hope that's not the way most people would describe me. I see the good, I embrace the small victories. I am ever so grateful for the village of support that I have, the hard days are hard, but I know I am not alone.





Sunday, November 13, 2016

School Choice, through the eyes of this autism mom

How does school choice effect students like my son?  I thought about this question on my run today. It was a perfect late fall day for a run, and out there, as my feet rhythmically hit the ground, my mind sorts through all the random thoughts to find clarity.  Today's clarity came in the form of school choice and special needs kids.

I could be wrong, I freely admit that from the onset.  

School choice is essentially privatization of education.  Which may or may not work for typical kids; it definitely will not work for kids like my son.  It won't work for him because he doesn't conform, he will not quickly master skills, or demonstrate standards.  In a business model that rewards progress my son would become akin to a defective part.  He would be cast aside, kept quiet, with minimal support and even fewer resources.   His education costs significantly more and yields considerably less, from a standardized measurement perspective.  He didn't learn to read in first grade or second grade or even in third grade.  He finally discovered literacy as a senior in high school, though he still has a long way to go to be considered functionally literate.

The value of his education isn't measured by tests, or by mastery.  The value of his education is in the small triumphs each day brings. The value of his education is in the life skills he teaches his peers.   Nest time you hear someone touting school choice, consider what could be lost, consider who could be overlooked, consider the consequences for kids who have no voice.

Tuesday, October 11, 2016

The Birthday

Recently, Jackson's birthdays are melancholy.  I am filled with angst, fighting the long, worn battle of "blessing or burden."  
And I find myself here, spilling my thoughts and sharing my heart.

19.
I reflect on that time of blissful ignorance.  That time of infinite possibilities.  That time of hope and promise.  That time before autism defined my son; limited my son; imprisoned my son.  Sometimes it seems like just yesterday.

You know? Like when you turn around and suddenly the baby you carried is skipping into kindergarten?  Or you blink and your sending them off to college? Yeah, like that.  Once upon a time, in the south, when I was young and still in love, I had a baby.  He was every dream, every hope, every prayer answered. And now...he is 19; and he is amazing; I love him.  I hate his autism.

I get it. 
I know.
I know....

"Typical" 19 ain't so grand; it's probably sullen, moody, and messy.
This I remind myself when I find the darkness closing in; there is much to be celebrated.

There is, there is much to be celebrated.
And sometimes, sometimes there is so much loss that I grieve for what might have been.  
I get angry.
I get lost.
My heart leaks out my eyes.

I need to know that somehow, there is a way to a happy ending.
I see those words and realize I create that happy ending.
I choose that happiness.
For us.  
So tonight, I'm gonna let my heart leak out my eyes.  I'm gonna grieve, be sad, angry, and more than a little pathetic.  I'm gonna get it out of my system so that tomorrow I can get up and celebrate all that things that make 19 amazing.

Thursday, July 28, 2016

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 Pok√©mon 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.

Sunday, October 11, 2015

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...

Tuesday, June 23, 2015

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.

Monday, April 27, 2015

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.