Tag Archives: sensory

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

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.

A Grand Passion

When I bestride him, I soar, I am a hawk.  He trots the air; the earth sings when he touches it; the basest horn of his hoof is more musical than the pipe of Hermes.
~William Shakespeare (The Dauphin, Henry V, Act III, Scene VII)

IMG_8524

Several months ago, I enrolled Jackson in an equine therapy program at Hopes, Dreams and Horses (“HDH”) of Jupiter Farms.  Prior to our initial consultation, I completed an extensive enrollment packet detailing Jackson’s diagnosis, abilities, restrictions and our goals.  Our first meeting was with Sue Copeland, Home Dreams and Horses’ Executive Director, and Program Director/equine therapist Carly Brown.  Ms. Brown immediately engaged Jackson in conversation.  We were given a tour of the facility and had a chance to meet the horses used in the program, as well as boarders.  Ms. Brown listened to my concerns attentively and assured me she would meet Jackson on his level, while working with him at his own pace and point of comfort.  I’m beyond pleased to say, this is precisely what she has done over the past several months.

IMG_9669
Initially, Jackson was extremely apprehensive.  He had been around horses before, however, he had never ridden one.  Instead, he was content to merely stand in close proximity, petting or grooming them—the bigger, the better.   He spent the first few sessions at HDH on the ground, talking to, petting and grooming whichever horse Ms. Brown selected for the session.  To be honest, I wasn’t certain Jackson would ever be agreeable to sitting astride a horse.  His sensory issues can be extremely overwhelming and limiting at times, which makes for a very stubborn and unyielding child.  There is no amount of coercing, bribery or cajoling that will call Jackson to action when he is uncomfortable or unfamiliar with a situation.  I will never forget the joy I felt when Jackson first mounted Bruno.  As nervous as I was, it brought tears to my eyes.

Following Instructions

Following Instructions

When I tell people Jackson participates in an equine therapy program, they presume he is taking riding lessons.  I cannot, nor will I, classify what he is doing as simply a riding lesson.  That would do a great disservice to the Hopes, Dreams and Horses equine therapy program.  What happens in these twice-weekly 30-minutes sessions is so much more.  God bless, Ms. Brown.  Seriously.  That girl has the patience of Job.  She and the volunteers are, as are all good therapists worth their salt, exceptional human beings.  Ms. Brown cares deeply about her clients and the program’s horses, so much so that I can’t tell you which she holds in higher regard.  That’s really saying something about folks with a true footing in the equine world.

His favorite horse, Blaze.

His favorite horse, Blaze.

Every single second at the stable and on horseback is an intense lesson for Jackson.  Truth be told, I think Jackson may have a minor glitch in his short-term memory.   This being said, each session requires much repetition.  Every action has meaning.  From hand, reign and body placement, to mounting the horse, to participating in the “scavenger hunt” type sessions, nuance matters.  Think about it.  How DO YOU maneuver a 1,200 pound horse alongside an arena rail, close enough to grab an item from a bucket affixed to the rail or post?  That takes thought and requires delicate finessing of the animal.  Riding requires so many subtle body movements, something that is challenging for someone who lacks intuition and has difficulty with fine motor skills.  Throw joint laxity and sensory integration/processing challenges into the mix and you can imagine how patient, tender and encouraging Ms. Brown and her staff must be.
IMG_0190
Perhaps one day Jackson will have that beautiful fluidity many riders exhibit atop their mounts.  In the meantime he has much work ahead of him.  I’m grateful that he’s having fun while he works so hard though.  And I find those 60 minutes we’re at HDH to be perhaps the most peaceful 60 minutes of my week.

Jackson and Blaze.  Unadulterated love.

Jackson and Blaze. Unadulterated love.

Riding a horse is not a gentle hobby, to be picked up and laid down like a game of solitaire. It is a grand passion. It seizes a person whole and once it has done so, he/she will have to accept that his life will be radically changed. ~Ralph Waldo Emerson

The following benefits are excerpted from the Hopes, Dreams and Horses website. ( http://hopesdreamsandhorses.moonfruit.com/)

Benefits of equine interaction:

  • A sense of self; personal growth
  • Develops kills for healthy relationships
  • Develops trust and bonding
  • Increases confidence for boundary setting
  • Develops assertiveness (rather than aggressiveness)
  • Improves self-confidence
  • Reduces stress by achieving peace of mind
  • Behavior modification
  • Fosters interest in the outside world
  • Develops confidence to work through fears
  • Emotional control and self-discipline

Therapeutic horsemanship involves interaction with horses, staff, volunteers and other participants.  Benefits include:

  • Improved positive communication styles
  • Increased teamwork and socialization
  • Improved verbal and non-verbal communication
  • Recognition of body language
  • Fosters respect and love for people and animals
  • Encourages friendships; facilitates an equine family
  • Inspires independence
  • Provides social stimulation
  • Increases interest and enjoyment of the outdoors
  • Increased sense of responsibility and respect
  • Develops patience and understanding of others

Halloween

Halloween has come and gone.  Thankfully.  I’ve never been a big fan.  Even as a child it was a pretty disappointing holiday.  I grew up in a really rural area in Western Pennsylvania.  We literally lived in the middle of nowhere.  Our neighbors were half a mile or more away, depending on the direction you traveled. Add to this disappointment the fact that it was always bone chilling cold and Halloween was pretty much a bust.

Halloween was more celebratory when my daughter was a child.  We lived in a neighborhood with families and children, so she always had a great time.  Fast-forward twenty-five years to Halloween 2009 and I would have told you I expected more of the same with munchkin given our neighborhood.  Notice I said, “I would have told you,” not “I can tell you.”  That’s because it didn’t work out that way.  From Jackson’s very first Halloween he has fought any and every part of this cursed holiday.

Jackson has never accepted any type of costume—no matter how unobtrusive.  From checkered shirts and jeans (cowboy) to tank tops, shorts and sneakers (basketball player), Jackson has hated costumes.  Every bit of it is overload for him.  Too much chaos.  Too many people.  Too much noise.  Too many folks in his face grilling him as to why he isn’t participating in this silly, nonsensical event.  And let’s not forget he’s an extremely literal child.  The boy honestly thinks a person is permanently transformed when they put on any type of mask, makeup, prosthetic or outfit.

Until this year, the costume parades at school have yielded no better results.  The year before last the poor child was traumatized and clung to me while screaming at the top of his lungs.  Everything about Halloween is simply too much for him and by virtue of this, it’s too much for me too.

This year I came up with the idea of Jackson being Curious George and I would be The Man with the Yellow Hat.  Jackson thought this would be a great idea.  (He said it would be easy because he’s already brown.)  Of course he had very specific parameters for what would constitute his costume—short sleeves and shorts (w/no zippers or buttons).  That’s it.  That’s what was allowed.  It worked out perfectly.  I happened to have a brown knit tee and shorts that had been passed on to us from friends and added some construction paper monkey ears to one of my headbands.  Voila!  Curious George.  I was equally as lucky in pulling together my The Man with the Yellow Hat Costume.  We were a hit for the Characters in Literature Parade at Jackson’s school.  (Sounds so much better than Halloween Parade, don’t you think?)

Jackson had no desire to don his costume a second time to participate in the trick-or-treat aspect of Halloween.  Which is more than fine by me.  The child has never had a single, solitary piece of candy.  His choice.  So sitting out the door-to-door process is of absolutely no consequence to him whatsoever.

People appear to be utterly shocked when they ask how Jackson liked trick-or-treating.  And I feel like the Grinch Who Stole Christmas when I tell people I don’t like Halloween.  How about you?  Is there anyone else out there whose kiddos don’t enjoy “All Hallows Even?”  Image