Category Archives: Autism

I’m Going to Cry

I’m going to cry.  I’ve already warned them.  And I’ve hipped them to the fact that I’m an ugly crier.  A really ugly crier.

Jackson’s last day of ARTS Camp is today.  I’ve previously written about the opportunity presented to him to attend a local day camp.  I had no idea what to expect at the camp itself.  And I certainly didn’t know what to expect from Jackson.  The camp is held at a large school, one we’ve never been to.   Additionally, strangers to our family staff it.  There isn’t one common denominator that connects Jackson with this camp.

The first day of camp started as I rather expected.  Jackson didn’t want me to leave and everything was overwhelming to him—the number of people, the size of the cafeteria (where sign-in takes place), and certainly the noise level.  Jackson was terrified.  The camp director took us into an ancillary room to calm Jackson down.  Camp counselors—a lively, energetic, passionate and CARING group of kids who attend the high school, immediately surrounded him.  It was as if Jackson immediately had a triage unit to acclimate him to the camp experience.  I was blown away.  I spent two hours with the director, touring the camp, meeting individuals and peeking in on Jackson to make certain he had settled down and settled in.  Blessedly he had.

In four short days I have grown to love these folks.  And so has Jackson.  It’s going to be hard to walk away from this camp and this group of people who have loved on our son from the minute they met him.  To say this camp has been a blessing doesn’t begin to convey my thoughts and emotions.  But the tears I cry when I pick Jackson up this evening sure will.  Note to self:  bring tissues.  A big box of tissues.

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.

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)

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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.

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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.
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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