Tag Archives: education

Kickoff to Summer (And, cancer sucks.)

The school year ended and summer has immediately come into full swing. Jackson is already halfway through his first of four weeks of various summer camps he’ll be attending.   The following is a text I received the first day of camp from one of Jackson’s many A.R.T.S. Camp counselors.

“I can’t believe it! I am beyond proud of him. Oh, my goodness! He’s been going to all his classes and made many friends today! He’s doing the group cheer too! I’m so happy for him. He’s come so far!!! #teamjax” ~K.S.

This is the second year in a row Jackson has attended Dreyfoos School of the Arts’ summer camp.  Photo courtesy of The Muse DSOA

Photo courtesy of The Muse DSOA

This report is vastly different from updates I routinely received from last year’s camp director and dear friend, Lea Jefferson. Lea, I’m grieved to report, is no longer with us. She passed away in March after bravely and valiantly battling breast cancer.  Heaven gained an angel when Lea departed this life. She was, in my experience, a saint amongst the living. Lea’s selfless and tireless dedication to not only the kids at Alexander W. Dreyfoos School of the Arts, but to various underserved children in Palm Beach County as well, stands as a testament to her loving and giving character.  Those who knew Lea carry the treasure of her in their hearts. We are better for knowing her.

Lea literally dogged me to allow Jackson to participate in A.R.T.S. Camp. She began her campaign long before he was even of age to do so. Despite (my) great reservations, Lea was positively relentless. (I was certain Jackson’s sensory prohibitions would result in a waste of everyone’s time and efforts.) I am eternally grateful Lea didn’t allow me to blow her off. Not only Jackson’s life—but also OUR lives—are richer for her tenacious efforts. We hold the camp counselors near and dear to our hearts. Not only have they worked magic in Jackson’s life, but have become family. There are only two days of camp remaining. And once again, I am preparing to ugly cry.A.R.T.S. Camp Counselors DSOA 2 DSOA 3 DSOA 4 DSOA 5 DSOA 6 DSOA 7 DSOA 8DSOA 9

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.

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.

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

Next!

Well, we’re just about three months into the school year and munchkin was transferred to a new class this week–a move his ESE team and I decided upon last week. For a rigid child who doesn’t handle change well, it’s been a tough week.  I can’t tell you how many times he’s asked me, “When do I get to go back to Miss A’s class?”  I think I’ve had almost as tough a time with this as Jackson has.  There’s comfort in the known for all of us.

Jackson’s new class is vastly different than his previous class.  Miss A’s class had grown to a mix of twenty-plus girls and boys, typical children and children with mild developmental delays.  His new class has eight children, all boys, all of whom are on the autism spectrum with developmental delays of varying degrees.  It’s a lot to get used to for me as a parent, so I’m certain it’s a lot for Jackson to get used to as well.

True to form, I can’t pull any information out of Jackson with respect to what they’re working on or what they’ve been doing in class.  I do believe the emphasis has been taken off academics and now focuses on the social skills required to interact in a classroom setting.  While this social component is much needed and certainly something Jackson obviously lacks, it enforces the reality that munchkin is non-typical—something I’m occasionally still coming to terms with two years post diagnosis.  I’d be lying if I said I wasn’t sad that Jackson isn’t with the children he’s become accustomed to over the past three months.  I’m sad that he misses the class gerbils, Peach and Penelope.  I’m sad that his former classmates are busy making paper turkeys and various Thanksgiving-related crafts and eagerly planning a Thanksgiving feast, while Jackson doesn’t even know a major holiday is around the corner.  I miss the loving and compassionate Miss A whom I’ve grown to trust and have enormous admiration for.  And most of all I miss those adorably catchy songs he came home singing for hours on end.  Oh well, onward and upward, right?

It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change. ~ Charles Darwin

Shine Your Light

I have a confession to make.  I’m insecure.  I have been my entire life. To compensate for my lack of self-confidence I’ve historically been a rather gregarious gal.  Hiding behind this public persona, however, is a person deathly afraid of rejection.  I talk a good game, but truth be told I hide my life and my “light” from the world.

In previous posts, I’ve shared links to both a recent local television news segment [http://bit.ly/15QPPR2] and half hour news show [http://bit.ly/153Jhiu] I participated in, both of which speak on the subject of autism (early diagnosis and education, respectively).  Terrified of public speaking, I told myself that it would be completely worth it if our family’s story helped one person.  Let me tell you—I was elated to receive an e-mail from a woman who saw the news show on autism and education and was looking for information.  The discomfort I experienced by appearing on that show was well worth it based on this single e-mail from the grandmother of a young boy with autism.  She was seeking information on schools, programs and medical providers.  I was beyond thrilled to share information I’ve gleaned and compiled over the past two years.  Additionally, another woman contacted me via a mutual friend of ours.  She has a daughter with autism and is relocating to Palm Beach County.  She too was seeking information on education and healthcare/therapy providers.

Had I not stepped out of my comfort zone I wouldn’t have been able to help these women. The bottom line is this:  Folks took notice.  Awareness was raised.  People—just like me—are looking for help and searching for answers. Don’t isolate yourself.  People aren’t out to judge you. (Well, at least not the majority of them.)  Parents are simply looking for help.  They’re looking for a connection.  They’re looking for acceptance.  Their eyes are upon you and me. Illuminate your journey and you’ll light their path.  That’s part and parcel of our experience.

 “You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven.” ~Matthew 5:14-16

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My husband and I are partners in a branding firm.  When we were planning for our adoption our game plan, once our munchkin was home and settled, was to bring him to the office with us.  We were excited for Jackson to be a part of our little company.  One of the many reasons we wanted to—and were excited to—do this was so he could see us in action in the office, which would hopefully give him an appreciation for hard work.  My husband and I have always referred to ourselves as “Team D—D squared,” but looking forward, we’d be “Team D—D cubed!”

My husband returned to work within days of our return home from Ethiopia.  Several weeks later, once we were settled with a routine established, I attempted to take Jackson to the office.  I brought a bag filled with bottles, diapers and toys and set up a portable crib.  I closed my door and played soothing music.  For naptime I downloaded white noise on my iPhone, closed the blinds and dimmed the lights. I tried everything, but it was impossible to keep Jackson content or quiet.  It was abundantly clear.  Our plan to bring Jackson to work so I could return to our physical office in any capacity was simply not going to happen.  Jackson’s high energy/high octane presence was far too disruptive in the office setting.  To say it was counterproductive would be a disingenuous understatement.

I began to work from home and started to set deadlines for a return to the office.  I started with a goal of six months.  Six months became one year.  One year became eighteen months.  You get the gist.  I tried to bring Jackson into the fold, not only at these milestones but also in between, to no avail.  I honestly don’t remember when I simply gave up on the goals, but I did.  I chucked the idea of ever returning to work with Jackson as my/our sidekick.

Let’s fast-forward four years and five months.  (But hey, who’s counting?)  Last month Jackson began VPK.  He is in school six hours per day, Monday through Friday.  I finally returned to the office and can’t express in words how good it feels.  I never in a million years thought I’d be so happy to park my butt at a desk.  It’s not the work per se that has me excited.  I’ve been getting by while working from home.  (To be honest, that statement probably errs on the side of gracious.)  It’s the idea of being a part of something again.  I’m part of a team, as opposed to slaying dragons by myself all the livelong day.  And this absence from Jackson affords me a deep breath of sweet, fresh air that I definitely and desperately need.  It allows me to savor my time with him so much more than when we’re glued together 24/7.  And as an added bonus, I actually wash my face, brush my teeth and take a shower.  And this is daily, folks!  And for an added double-bonus, I get to wear decent clothes!  These are all things I took for granted pre-munchkin.  I have a new understanding of and appreciation for the idiom “absence makes the heart grow fonder.”  It’s a given I’ve always been fond of this little munchkin of ours, but seeing him light up when the teacher walks him out to carline absolutely sets my heart afire.

 “Once you become the mommy or daddy in your child’s world, it is the only world in which you exist, no matter how much you fancy there is a separate world of your own.”  ~Robert Brault