Tag Archives: children

Unworthy

This morning as Jackson and I were pulling into school I pointed to a break in the clouds and told Jackson God was looking down on us and telling him to have a great day. He said, “Good morning, God! Keep your eye on me today!” I reassured him God keeps his eye on him at all times, watching over him, protecting him. Jackson then told me of playing tag at recess, and how he laughs with his friends. As I pictured this in my mind, my eyes filled with tears. Tears of joy. Tears of happiness. Tears of humility. Tears of unworthiness. Tears of the knowledge of God’s overwhelming grace.

I always tell people I’ve never met a happier child than Jackson. He is happy from the moment his eyes flutter open at the crack of dawn until they flutter closed at day’s end. The child does not know a bad mood. Something about this really struck a chord in me this morning. It was an unexplainable sense of how blessed–yet how unworthy—I am to parent these two children of ours. Every time I think about it, I’m overcome with emotion.

I have no idea what God sees in this wretched soul, but I am grateful for this precious gift of parenthood He has bestowed upon me. My undying prayer is that I bring glory to Him in this mess of life.

Children are not casual guests in our home. They have been loaned to us temporarily for the purpose of loving them and instilling a foundation of values on which their future lives will be built. ~James Dobson

An Independent Rider

I’ve previously written about Jackon’s horseback riding lessons but his experience at summer camp is a different story worth telling. Jackson just completed his second week of summer camp at Hopes, Dreams and Horses’ Camp Horse Power.

Week one was a welcome return to Hopes, Dreams and Horses (“HDH”) for Jackson. He hadn’t ridden since May so he was over-the-top excited to see Miss Kristy and his equine buddies. He goofed around and had a lot of fun. On Friday there was a program for the campers to exhibit the skills they learned throughout the week. Initially Jackson protested, stating he wasn’t going to participate. Now, he’s been riding at HDH for a year so I didn’t understand what the fuss was about. I told him he had to do it and give it his best shot. There were only four campers for the week, with Jackson being the youngest. He was the only child who required a lead line escort to perform the course. Everyone applauded after Jackson’s first performance (they were permitted two). That did it! He loved the praise and accolades and couldn’t wait to perform the course again. The second time it was a more confident and self-assured Jackson astride the horse.

I arranged Jackson’s summer camp schedule so he would have a week of downtime between camps. Of course he couldn’t wait to get back to HDH. Riding was all he talked about throughout his off week. During this week off my husband and I brokered a deal with Jackson. We told him that if he at least attempted to ride without a lead line in Friday’s show he could get a new train.

Jackson returned to the second week of camp a new child. He was determined to ride by himself—something he should be doing anyway, given his year of twice a week lessons. Jackson and I informed the camp instructor of our deal. She paired Jackson with a horse suited to his ability, and he set about learning to ride independently. He rose to the occasion. It was amazing to see not only the progress he made each day in his riding ability, but the confidence and self-assurance he gained as inherent by-products of his achievements as well. He was a new kid. He finally took ownership of his horsemanship instead of relying on the instructor to lead him around the ring. The latter simply enabled Jackson to lose focus and perpetuate a very lazy and passive approach to riding.
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I’m overjoyed to say Jackson did it! He met his goal of riding independently in Camp Horse Power’s Friday program, and performed the entire course twice. He knew exactly what he needed to do throughout the course, and responded appropriately to the instructor’s reminders regarding hand placement and posture. I was so extremely proud to watch him—more for his sake than my own. He worked hard throughout the week and it paid off. Whether you’re five, 50 or 105, who doesn’t love to feel that sense of accomplishment?

Great job, Jax! Your dad and I are so very proud of you. Now let’s go get that train.

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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

It’s a good thing I don’t write to earn my keep.  If that were the case I’d be starving based on my last blog post.  Writing is indeed an outlet for me, but it is also a privilege—one I’m not often afforded.  The tradeoff is rich, however.  Our little tribe has lived a rather full life over the past few months.  Not full by the world’s standards, but full in the meaning of life.  We’ve shared a lot of quality family time, and Jackson and I have had a lot of special mama-son adventures too.  Throw in work and household responsibilities and well, you know what I mean.  Time escapes me.

Summer is fast approaching.  I recently finalized our summer schedule.  This is something new for me.  A summer “schedule” isn’t something I’ve had the luxury of planning in the past. However, Jackson has reached some major developmental milestones in the past year, so blessedly some opportunities have opened up to him.

One such opportunity is a weeklong day camp someone has very unexpectedly and graciously presently to Jackson.  The offer was completely unsolicited and I cannot express in words how very grateful I am at the prospect of this camp.

Over the years I have received countless empty promises of assistance and help from friends and acquaintances.  These empty promises, combined with the general disappearance and/or absence of folks I once counted as friends, have left me jaded to say the least.  I’m no longer bitter about it (admittedly I once was), it’s just a fact of life I imagine most parents of children with varying challenges face to one degree or another.  Once I accepted the exodus of these folks from our lives it freed me to be self-sustaining.  All this to say, opportunities such as this camp haven’t been extended to us in the past.  Every activity Jackson participates in has been a hard fought victory for which I’ve groveled and even shed a few tears.  Victories I do not take for granted for nary a second.  I was and still am blown away by this mere acquaintance’s gracious invitation.

I profoundly expressed my gratitude while speaking with her to complete the initial paperwork.  She downplayed the situation, stating she believes the world needs a stronger sense of community—something I wholeheartedly believe and try to live out daily.  The world would be a much better place if we all stepped out and stepped up to help those around us.  This may be something as simple as surprising your coworker or employee with a coffee or asking your neighbor if they need something at the grocery story.  Kindness and generosity don’t have to break the bank, and are oftentimes something as simple as holding the door for someone or saying, “Thank you,” to someone who opens a door for you.

So I emphatically say, “Thank you, kind woman,” for taking a chance on our son. It’s going to be a great summer.  My heart tells me so.

Play

“Play is often talked about as if it were a relief from serious learning. But for children, play is serious learning. Play is really the work of childhood.” ~Fred Rogers

Why, as a society, have we deviated so far from this mindset?  We push our kids into a tiny, constrained box, and expect them to behave accordingly.  (And that box continually gets smaller and smaller.)  Subsequently, when our children don’t conform to society’s perception of a “good” child, we slap labels on them.  And why?  Is it because we’d rather parent and educate automatons as opposed to vibrant, precocious, inquisitive and curious little beings that take energy, time and effort?  That’s a rhetorical question, folks, but one we seriously need to consider.  As the parent of both a 32 year old and five year old, I say this with authority and from a VERY unique perspective.

Bear in mind, I say this as the parent of a child who definitely has all the classic characteristics associated with high-functioning Aspergers.  BUT, I’ve encountered more than a few medical professionals who recklessly want to add additional letters to his diagnosis.  I also see so many other kids who are simply playful, curious, active, etc., who clearly don’t deserve to be alphabet soup children.  I want to shout, “THEY’RE JUST KIDS, for Pete’s sake! LET THEM BE KIDS!”  We need to take charge and advocate for them.  We really do.  We are THE VOICE for our littles.  Certainly not the schools.  Not the doctors.  Not the busy bodies in the grocery store.  We, the parents, are their voice.

Perseverated is not a bad word

per·sev·er·ate – To repeat a word, gesture, or act insistently or redundantly.

Recently, my husband and I made plans for a “date night” with our son.  Weather permitting (which it didn’t), we planned to go on a picnic dinner the following evening.  Our date was to include the three of us and our dogs at a local dog park.  My husband voiced the idea to our son prior to his bedtime one night this week.  The impending evening’s date was the first thing Jackson mentioned upon waking the following morning.  And according to Jackson’s teacher (the same day), he apparently “Perseverated on needing day to end so he could get to ‘date’ with mom and dad at dog park.”

I’m just spit balling here, but I don’t think the teacher’s note was written in a favorable tone.  And please understand, I don’t think Jackson’s teacher is being overtly critical or mean spirited when she pens notes such as this.  (This wasn’t the first time.)  But I’ve got to tell you, I also do not instinctively see a negative when I see a note such as this—probably to his teacher’s disappointment.  My mind (blessedly) isn’t wired for that.

As challenging as Jackson can be at times, I’m grateful I can see his light shining through.  Additionally, I’m able to remind myself of his difficult origins.  If it sounds as if I’m trivializing matters, please know I’m not.  And I’m also not saying I don’t sometimes lose my cool.  I do.  (See previous post from 1/23/2014 titled “Fail.”)  But I also know I drive myself most crazy when I let people of “authority” into my head.  That’s when I start to panic over Jackson’s “differences” and challenges.  It’s when we receive back-to-back reports of “defiance” and meltdowns that I literally go into overdrive researching autism spectrum disorder (“ASD”), Asperger’s Syndrome and sensory processing disorder (“SPD”).

With a clear head, at least for this moment, let me tell you what I really see when I read a notation such as the one mentioned above.  When I read the word “perseverate,” I see perseverance—a noun meaning steadfastness in doing something despite difficulty or delay in achieving success.

When I see the word “date,” I think of doing an activity with someone you might have a relationship with.

And as for the words “mom and dad,” well those are a given.  And they’re really special, considering Jackson’s origins as an orphan who spent his first five months of life in an orphanage in Ethiopia.  Truly.  Special.  I’m beyond humbled with gratitude over the titles “mom” and “dad.”  It’s one I sport proudly and don’t take lightly.

Sometimes it’s all about perspective.  The definition of which is:  The capacity to view things in their true relations or relative importance.  Thinking back to that same day, and the expectancy of a date night with Greg, Jackson and our dogs and some Chick-fil-A at the dog park?  I confess.  I perseverated too.  That’s the truth.  It’s the absolute truth.

The Family that Skates & Scoots Together…

Jackson and mom--skating and scootingFor the past few weeks, I’ve been mulling over a post about our family’s newest hobby.  At the tender young ages of 45 and 49 respectively, my husband and I have taken up skateboarding.  I don’t mean tooling around, meandering the neighborhood, while taking in the sights.  We’re hanging with the big dogs at our local skate parks.  No.  We’re not crazy.  This came about because of the importance we place on family time.  Jackson loves to ride his scooter, and he’s very good at it.  He’s agile.  He’s graceful. And he’s FAST.  When Jackson scoots around the neighborhood, safety dictates that I run in tandem with him so I can monitor driveway traffic.  This means I’m sprinting for one to three miles at a given time.    One recent Sunday afternoon, we took Jackson to the skate park simply as an outlet for him.   My husband and I decided to give it a try too, so we could make the outings truly about family.  We’ve been hooked ever since.

 

Jackson and dad, learning the ropes.

Jackson and dad, learning the ropes.

I had so many amusing things to say in my originally intended post.  I was going to speak about the fact that I skate with orthotics in my Vans and use an SPF of 50 religiously.  I was going to talk about the fact that it takes a good 15 minutes to get the joints, tendons and bones adequately lubed in my feet and ankles.  And I was also going to mention how tolerant and even accepting most of the young whippersnappers are.  Aside from a few occasionally potty-mouthed teens (which are dutifully kept in check by fearless skate park manager Michelle), we’ve not had a bad experience.  Until today, that is.

Going down (and stimming all the way).

Going down (and stimming all the way).

As is with most Sunday afternoons as of late, we went to our local skate park following church.  Our friend, Paul, joined us.   The four of us were having a great time.  We skated and scooted hard, working up a sweat.  We were all attempting new things and chatting up the really young kids who are beyond encouraging.  Jackson was doing his thing, going up and down hills and riding his scooter around the park.  I was standing on top of a hill with my new “friend,” Sam, when a young boy ascended the ramp and stopped in front me.  The boy was around eight or so.  He mumbled something to me but I didn’t understand what he said.  I asked him to repeat himself, which he did.  He said, “Make him stop.”  I asked, “Make him stop what?”  He said, “Skating.  He’s creeping me out.”  I was utterly taken aback, but replied, “No.  He’s just scooting.”  He said, “No.  He’s not,” and skated away.  I knew exactly what he was referring to.

Sam, also around 8, overheard the conversation and asked me what the boy was talking about.  I simply explained that Jackson sometimes makes noises.  I loved Sam’s muttered reply to the already-gone boy, “Get over it.”  I wasn’t completely surprised this happened.  I expected it.  Someday.  Nonetheless, I wasn’t prepared for it.

You see, Jackson verbally self stimulates.  [http://www.autism.com/index.php/symptoms_self-stim]  He makes sounds.  All.  Day.  Long.  Seriously.  He’s done it for years and rarely stops, if ever.  I took Jackson to the skate park on a school holiday this past week.  I chose not to skate with him, as we were running some errands afterward.  As I watched Jackson from the observation deck, I heard him clearly.  He was uttering endless variations of completely nonsensical words and sounds.  I could see some of the older children looking at him with curiosity.  It was in watching the kids’ reactions that I knew someone someday would say something.  I just didn’t think it would happen so soon.  He’s only five.  Five!  For Pete’s sake, Jackson’s only five.

My initial gut reaction (which I DID NOT act upon) was to say, YOU creep ME out, you little brat.”  THANK YOU, LORD, for reigning in my tongue.   You can come at me all day long; just don’t you dare come at those I love.  I will defend my brood to the end.  I promise you that.

I’m profoundly sad about today’s event.  I get a lump in my throat every time I call it to memory.  I’m not sad for myself, mind you.  I’m sad for Jackson and the unkind people he will encounter throughout his life.  He has such tenderness about him.  Heck.  This is the boy that asks every single person who falls at the skate park (and there are many), “Are you okay?”  He’s kind.  He’s considerate.  He’s loving.  He’s trusting.  And people are going to break his heart and crush his spirit.  That’s the nature of us human beings.  As a whole, we don’t tolerate different no matter the age.  The mere thought of this shatters my heart.