Tag Archives: autism

Unless…

This.  This photo right here.  You have no idea what this photo represents to G and me.  

Unless you have a child who has difficulties interpreting and comprehending the subtle nuances of social interaction, you more than likely don’t understand the magnitude of this photo.  Unless you have a child who doesn’t “get” the give and take of social interaction, this photo probably seems mundane.  Unless you have a child who doesn’t have a single real and true friend, you most likely don’t grasp the overall import of the seemingly simple interaction depicted in this photo.  Unless you have a child who comes home from school in tears, sobbing that his classmates think he’s the dumbest kid in his class and ostracize him from much of the day’s classroom and playground interactions, you can’t possibly comprehend the joy this photo brings to two concerned parents.   Unless your child pleads with you to “find a friend” for him, you can’t possibly understand how this photo shatters two parents’ hearts into a million tiny shards. 

A friend is something most of us take for granted, yet is so very vital to our complete wellbeing.  We were created to be social creatures.  When that simple, yet necessary component is lacking in our lives we are incomplete.  It’s a vacancy we feel in our soul.  And when you try your very best, oftentimes forcing the situation, the rejection can be gut wrenchingly debilitating.  

This weekend we had the pleasure of spending Friday evening in the company of a family we’ve been promising to have over for dinner for years.  They’re a family we instantly connected with at the skatepark years ago–G with the father, J-man with the son, and I with the mom.  Yet, as life oftentimes does, it got in the way of the six of us getting together.  Yes, G and I had a wonderful time conversing and laughing with “N’s” parents Friday night, but the highlight of the evening was how J-man and “N” related and interacted.  It was a beautiful sight to behold, stopping G and me in our tracks time and again throughout the evening.

Sunday, while out on our 52-mile pedalabout, I received a text from “N’s” mom stating he wouldn’t stop asking when he could see J-man again.  I replied, telling her we’d be back by one o’clock and he was welcome to come over.  The two boys again connected instantly.  They picked up where they left off, engaging in NERF wars, sword fights and playing Minecraft.  Even the video game had serious interaction–communication, teamwork, instructing and encouraging one another and trash talking.  I was in HEAVEN! 

I’m a firm believer in the adage it’s the little things in life that make life so very rich.  This photo is proof of that belief.  Thank you, God, for answered prayers. 

The greatest healing therapy is friendship and love. ~Hubert H. Humphrey 

Unfettered

image

This post is somewhat of a follow up to my most recent post, “Untrammeled,” in which I spoke of the ways off-road biking has impacted our family. In this post, I’m writing to express just how much the people we’ve met along the way have impacted our family.

If you’ve read more than a few Sing. Dream. Hope. Pray. posts, you’re well aware of my thoughts and experiences regarding autism and the challenges and complexities of life as it relates to parenting a child on the autism spectrum. I’ve also written as to isolation (for both the child and parent(s)) as a high-ranking by-product of autism. The past seven years have run the gamut of these experiences—from good to bad and all points in between. Some groups and activities I thought would be beneficial have turned out to be detrimental. Conversely, there have been other endeavors we’ve undertaken with more than an ounce of guarded ambivalence and have been pleasantly surprised at the outcome. Without a doubt, mountain biking falls into this latter category.

I can’t speak for my husband, but for the first time in seven years, I feel like I’m part of a community, or village, if you will. For once, I feel like we’re not alone in this phase of life. Over the past seven years, I’ve witnessed Jackson being berated by adults for his behavior. We’ve been ostracized and literally turned away from places and events, going so far as to have doors closed in our faces. Unless you have a child with developmental challenges that, on occasion, manifest themselves in “undesirable” behavioral quirks and actions (sensory overload=flight response), you simply have no idea as to the stress a family can experience. A “thanks, but no thanks” mentality has been a prevalent theme in our lives. Until now, that is.

Our local biking community unwittingly and unintentionally provides a sense of belonging and inclusion. It’s a “safe” space and place, for not only Jackson but for our family. We’re accepted just as we are—warts and all. In typical Jackson fashion, he has the rule of the roost at our local bike trails. He’s the proverbial mayor of Club Scrub. He knows everyone and everyone knows him. When he’s at the trails, it is his domain. And the folks who share his domain couldn’t be more gracious. If you know Jackson, then you know he is all up in your business. People on the autism spectrum have difficulty realizing and navigating social boundaries, and Jackson is no different. It’s part and parcel of who he is. Blessedly, the folks we meet and spend time with, aren’t offended by this. Hallelujah! For the first time in seven years I’m not making excuses and apologies. I don’t leave the trails with tears of embarrassment, humiliation or indignation.

The grace doesn’t stop there, however. In addition to welcoming and embracing this little trio of merry makers, folks have literally taken it upon themselves to free Greg and me up to ride and participate in events singularly and as a couple by watching over Jackson at the trails. For the first time in years I’ve been afforded opportunities to socialize, participate in conversation and dare I say, make friends. Unless you’ve been marginalized by a life event, you simply cannot comprehend the overwhelming impact this gift has on a person’s quality of life.

For this acceptance and grace I offer my profound gratitude. Thank you, fellow MTBers. You are a blessing.

 

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A Pencil Box and a Broken Mold

The Tell Tale Pencil Box

I knew what was in munchkin’s backpack as soon as I picked it up. The sound of something rattling around in hard plastic painted a clear auditory picture. I knew it was going to be munchkin’s pencil box. And my breath caught in my throat. It was a bittersweet realization that the school year officially ends tomorrow.

Star StudentI could not be more pleased with how this year turned out.   Jackson’s teacher has far surpassed any hopes or dreams I had for a teacher.   Heading into kindergarten, my teacher characteristic wish list read like this:

  • Kind
  • Understanding
  • Nurturing
  • Passionate about teaching children
  • Committed to bringing out the best in kids
  • Tenacious (won’t throw in the towel when the going gets tough)
  • Creative
  • Energetic
  • Experienced
  • Seasoned, but not old
  • Young, but not too young
  • Well-versed in the land of IEPs
  • Fun
  • And most of all KIND

Yep. If asked, those were the qualities I was seeking in a kindergarten teacher. (And yes, I realize that list sounds a bit like a Match.com ad.)  And you know what? We got that and a whole lot more. Jackson’s teacher was AH-mazing. She brought out all the best in him over the past ten months. By the end of the first week of school, she calmed many of my fears and assuaged most of my anxiety. And with the exception of one little hiccup over “seat work” early in the term, Jackson positively flourished. And here we are at the end of the school year, and I don’t want to see her go.

He adores her.

This past Monday made me revisit my past anxieties. Jackson had a substitute teacher. As always, his actual teacher was very diligent in writing copious notes to the substitute, explaining Jackson’s tendencies and what to expect and how to be effective in reaching/dealing with him. En route to school, I informed Jackson of the situation and gave him reminders of what to do in the classroom. I knew the kind of day he had, however, the second I laid eyes on him at the end of the school day. “Mom, I have to tell you something,” he said. “Did you have a bad day?” I asked. “Yes,” he replied. And the tears just started flowing from his big brown eyes. Apparently he had blurted out an (or possibly more than that) answer in class. According to Jackson, the teacher raised his voice at him and told him he was being rude. And, yes. I’m sure that’s how it appeared. But it wasn’t intentional. It never is. Most often, Jackson simply cannot help himself. He is effervescent. (Think of a soda shaken and opened and you’ll have a pretty accurate illustration of Jackson. All day. Every day.)

Classroom birthday celebration

All this to say, what happened to Jackson Monday brought it all home for me. It made the end of the school year a realization, as opposed to an impending happening. The desperate hope I experienced last summer resurfaced just like that. I was again face to face with the fraught, all-consuming desire for Jackson’s next teacher—his first grade teacher— to “get” him, to understand him, to see his potential, and perhaps above all else, to be a tenacious soul who will never give up on him. In other words—a desire for Jackson’s next teacher to be a carbon copy of this year’s teacher. But I know that’s not possible. It’s just not. There is only ONE Mrs. Peterson.   The good Lord broke the mold when he made her. She’s just that special.
Trivia

One looks back with appreciation to the brilliant teachers, but with gratitude to those who touched our human feelings. The curriculum is so much necessary raw material, but warmth is the vital element for the growing plant and for the soul of the child. ~Carl Jung

There was no time and half in the contract for this gig.

There was no time and half in the contract for this gig.

Daisies and Butterflies

I don’t aspire to be a writer. I have no desire to be a well-known, gal-of-the-moment blogger with a million followers. Lord knows I’m not equipped for any of that. I simply write because sometimes I feel God puts something on my heart I’m meant to share. I’m usually pretty good at following His prompts. The one thing I absolutely do not ever in a million years want to do is pen posts solely about daisies and butterflies. In other words—I want only to keep it real. The good. The bad. The ugly. Real.

I write a lot about munchkin’s achievements. And they blessedly are ever increasing. But my heart was really pricked this past Wednesday at Jackson’s weekly equine therapy session at Hopes, Dreams and Horses. It was a lackluster day at best. The instructor, Miss Kristy, had the same basic commands on repeat this day. She could’ve simply recorded a voice memo and pressed the repeat button, with an amplifier attached. “Sit up straight.” “Butt down.” “Elbows in.” “Heels down.” Hands to pockets.” “Keep those elbows in!” “Keep that butt in the saddle!” “Sit up!” Bless her. No, really. Bless her!

When you have no control, just sit a spell.

When you have no control, just sit a spell.

Jackson has been riding here weekly for two solid years. And he loves it here. He loves horses. He loves to ride. But sometimes, he just can’t put it all together no matter how many times he’s heard it or done it. It’s as if it’s his (let’s be honest without hyperbole) third or fourth time on horseback. These are the days I take a deep breath and remind myself that we’ve come a long way with a long way to go.
Walk
So why am I sharing this non-newsworthy drivel? Because someone out there needs to know that it’s not all daisies and butterflies all the time. It’s two steps forward and one step back. Or one step forward and two steps back. All that matters is that you’re making progress. Whatever that progress is, own it. Own it! Did you hear that? Own it! Don’t let me or anyone else out there whose stuff you read on social media (the interwebs!) cause you to feel less than you (or heaven forbid, your child) are/is.

I’m just sayin’… You’re awesome. Continue to fight the good fight, no matter what that fight is. Just keep moving. It’s gonna be okay.

The only limit to our realization of tomorrow will be our doubts of today. ~Franklin D. Roosevelt

Why We Support Autism Speaks (And why you should to.)

It’s no secret our family supports Autism Speaks. And although our son is on the spectrum, our support isn’t based on any tangible benefit received from the organization. Our support is rooted solely in the commonality we’ve found within.

If you know our story, you know I recognized symptoms of autism in our son, Jackson, very early on. Our son was officially diagnosed in early November 2011, just three weeks shy of his third birthday. Although I had suspected autism for quite some time, I was devastated when the neurologist delivered the diagnosis. I was so fearful of the unknowns. I had no idea what life held for our son and was terrified of facing the future with a “team” comprised solely of my husband and me. In retrospect, my fears were unfounded, but that was my reality at that point in time.

Following our son’s diagnosis, I found a much-needed sense of community within Autism Speaks. I perused the organization’s website ad nauseam. As anticipated, I found a wealth of statistics, information and resources. We participated in our first Walk Now For Autism Speaks in 2013. Words cannot express the overwhelming sense of community I felt when we stepped into a literal sea of families at that first Walk. It was overwhelming and very much needed.

So you see, this is why Autism Speaks is an organization near and dear to our hearts. Please join us in supporting them. If not for our family, then do it to benefit the millions of other families affected by autism. Chances are, this means you.

#1in68

About 1 percent of the world population has autism spectrum disorder. (CDC, 2014)

Prevalence in the United States is estimated at 1 in 68 births. (CDC, 2014)

More than 3.5 million Americans live with an autism spectrum disorder. (Buescher et al., 2014)

Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention. (Autism Society estimate based on Government Accounting Office Report on Autism, 2006)

You Won’t Believe What Happened!

Disclaimer: Unless you are the parent of a child who faces exceptional challenges or has special needs, the following maybe lost on you. And that’s okay. Truly. It is.

This may not seem like a big deal to you, but today Jackson snapped and unsnapped his shorts. You may not grasp the significance of this, but I’ve waited for years for this to happen.   I’m talking about what most folks perceive to be the simple act of closing a fastener with two fingers and two thumbs. To date, this simple act has been out of Jackson’s grasp (no pun intended).

Fastening a snap!

Fastening a snap!

While I was getting dressed this morning, Jackson came running in to show me what he had done. I was happier for the pride he had in himself than I was for how proud I was of him. We’ve worked on this “simple” act for years. Today was a watershed event for our son.

Additionally, while at lunch, Jackson was able to traverse independently, and follow instruction when needed, in order to complete the maze on the restaurant’s placemat. Please don’t miss this. Jackson has worked with an occupational therapist for years. Until recently he was unable to properly grasp a writing implement. The fact that he is not only able to hold a Crayon, but is able to focus and discern a path and heed instruction is something we thought to be potentially impossible.

Navigating a maze

Navigating a maze

Our God is so good, folks. He is so very, very good. And we are so very, very grateful.

The difficulties and struggles of today are but the price we must pay for the accomplishments and victories of tomorrow. ~ William. J. H. Boetcker

Closing out another school year makes me realize just how far munchkin has come—especially over the past year.  At times it may not seem like we’re making progress (or not as fast as I’d like, might be a more accurate statement), however, when I take a step back and really think of those early days and the warning signs I saw, Jackson has progressed light years from where he started.

The other day I was compiling a mental list of the red flags that initially tugged at my heart years ago.  The list filled my head so quickly that I thought I should write it down, if not for any other reason than to remind myself of Jackson’s progress.  The following is a cursory list of things that used to send Jackson into a complete and total sensory meltdown.  The majority of these things have become non sequiturs, or bother him only minimally and only on rare occasions.

  • Hairdryer
  • Leaf blower
  • Hand dryers in public restrooms/being IN a restroom with hand dryers
  • Being in our swimming pool
  • Open car windows and/or sunroofs
  • Coffee grinder
  • Blender/juicer
  • Teakettle
  • Loud noises
  • Unfamiliar situations
  • Beach/sand
  • Standing in grass while barefoot
  • Having his photograph taken

It’s not a brief list.  Admittedly, I’ve taken his progress for granted and had forgotten most of these things.  It’s only when I really give pause to life’s day-to-day activities that I’m taken aback by all he has overcome.

The past few weekends have been busy for us.  We’ve had opportunity to participate in a couple of terrific autism-related events. Mother’s Day weekend Jackson participated in the local Surfer’s For Autism (http://www.surfersforautism.org/) event.  This is the second year we’ve been involved with this fabulous organization/event.  Last year, Jackson was terrified.  Although he had taken swimming lessons, he hadn’t yet learned to swim.   I understand how this would be overwhelming in and of itself.  Additionally, the prospect of getting water in his face was terrifying to Jackson.  This year, the event was a huge coup for munchkin.  Initially he was determined he was NOT going to surf.  He had convinced himself a tidal wave was going to sweep him out to sea.  But with much coaxing from me, my husband and the organization’s amazing volunteers Jackson gave surfing try.  With a death grip on the board he made multiple attempts to ride the waves to shore on his tummy.  That was all I asked for—that he give it a try.  I couldn’t have been more proud of my little bug.

An SFA wristband. A year ago Jackson wouldn’t even consider wearing it. This year he wore his band for the entire event. Small victories.

 

 

SFA Surf

 

 

 

 

 

 

This past weekend we participated in a 5K fun run/walk and kids’ walk for Florida Atlantic University’s (“FAU”) Center for Autism and Related Disabilities (“CARD”) (http://www.coe.fau.edu/centersandprograms/card/default.aspx).  My race took place at 7:30 AM and Jackson was excited to cheer me on.  The kids’ race was slated to take place immediately following the 5K.  Prior to Saturday morning Jackson had been excited at the prospect of running a race.   Once we arrived at the race, however, he stated he didn’t want to run.  I wasn’t going to push the issue.  I ran my 5K and while walking for my cool down I asked Jackson if he would run if I ran with him.  He said, “Sure!  Let’s go!”  We returned to the starting line and Jackson ran his first race.  He loved it!  Not only did he run, he was the first to cross the finish line.  He has already asked me when he can race again.  I’m so proud of Jackson for stepping out of his comfort zone.  That’s not an easy task for anyone, let alone someone with sensory processing issues.  And it’s not something he would’ve dared do just one short year ago.

CARD Race BibsJax Race

We also attended a birthday party for one of Jackson’s friends yesterday.  There have been many birthday parties we’ve attended where Jackson adamantly refused to participate in the activities and simply wandered off to lay on the floor, alone.  He had no interest in the excitement of the parties or the children.  Watching Jackson withdraw into himself at these parties was very difficult for me to observe as a parent.  On those occasions I honestly didn’t know what the future held for Jackson or for us as a family.  But watching him fully engaged, running and playing with his friend and the other children yesterday filled my heart with joy.

The past few years may not have always been easy and required much therapy and work, but it is so heartening to see the fruits of Jackson’s labor.   Of course, his progress makes this mama happy, but more importantly I’m thrilled to see Jackson overcoming, accomplishing and participating in things that were but a dream just a few short years ago.  I’m proud of you, Jackson.  You have worked so hard for these victories.  Savor them, my sweet boy.  Savor every minute of them.  You’ve earned it!

(If you’re interested, Jackson also participated in a Mother’s Day video at our church, Palm Beach Community Church (http://pbcc.cc).  Again, this is something he would absolutely NOT have considered doing a year ago.  Anytime the children’s ministry performed during a service, Jackson would bolt from the stage to the safety of his Sunday school teacher’s arms.   My husband and I both had tears in our eyes as we watched this video.  Perhaps you’ll get a chuckle out of it. Jackson appears at approximately minute 2:12 and at the end.  I hope you’ll take a look.  Enjoy!)

Mother’s Day at Palm Beach Community Church