Tag Archives: children

Summer Break Back in the Saddle

Boy, have I missed this. Until this past school year, these commutes played such a huge part in our daily lives. Not being able to ride our bikes to school (because of the distance) is a sacrifice I’m willing to make in order for J-man to attend a suitable school.

I’ve blogged extensively in the past about the role these biking commutes played in our lives during J-man’s first few years of elementary school. Biking the few miles to and from school and work afforded so many opportunities for J-man’s growth, development and betterment that we simply miss out on by riding in an automobile.

Summer is here though, and I intend to take and make as many of these moments as I possibly can.

See ya around town.

 

 

Squad Up

Ghost Tour Squad“Squad up!” was a phrase heard frequently during a recent school field trip. It was music to my ears.

Last week, I accompanied my son along with 10 of his fellow fourth-grade students and their parents on an overnight trip to St. Augustine. I had fun, yes, but the greatest takeaway for me was watching my son interact with his pals. It was a lovely sight to behold.

I’ve written in the past about challenges our son has faced with respect to school, academics and social interaction. That was actually why I started this blog so many years ago—to share these very real struggles and hopefully encourage someone who is walking an uncertain path as they navigate the world through spectrum-colored lenses. But it’s been awhile since I’ve shared much in this respect.

Last year at this time, I had so much I wanted to share. I desperately needed to vent, but anger and fear rendered me mum. Last school year—third grade—was an absolutely horrific year in every respect. It all started with the term’s first Standards Based Mid-Marking Period Elementary Progress Report issued at the end of September (2017). The report indicated J-man was failing school to the point of retention. School had been in session for less than six weeks when the report was compiled, and he was FAILING. To add insult to injury, the teacher didn’t even check the box requesting a conference. She simply sent the report home in my son’s backpack. And let me set the record straight; I’m a squeaky wheel. I am the parent who is in touch with my son’s teacher before the first school bell even rings. I want them to know who he is, who we are, and most importantly that I am here to help in any and every way. We are a team. Whatever a teacher needs from me, they get. All they need to do is ask. But I digress. Initially, I panicked. Then, I was livid. How reckless and cavalier this teacher proved herself to be. Sadly, this instance wasn’t an exception; this turned out to be her modus operandi for the entire school year. I wish I could tell you things got better, but they didn’t. The wheels fell completely off the wagon. Our son continued to quite literally and quite rapidly fall through the proverbial cracks. He received zero support from that teacher both inside and outside the classroom while I received zero support from the school administration and district. Our son began to be bullied on the playground and nobody even noticed. I firmly believe the children in my son’s class began to perceive him as inadequate based on the teacher’s treatment of and response to my son within the classroom. Every request for reassessment, reclassification and addition of services was met with rote dialog about bureaucratic policies and procedures and cautionary tales about kids obtaining services when they didn’t really need them.  Blah. Blah. Blah. The last thing I’ll tell you about last year is this; I finally secured the revised IEP for my son that he so desperately needed—IN MAY. Yes, it took seven and a half months for the School District of Palm Beach County to do what should have been done months prior. So much for “No Child Left Behind.” At the conclusion of the school year, my son said to me, “Mom, I’m so glad the year is over. I don’t want to go back there. I felt like I was invisible.” He was nine! No one should feel invisible, but especially not a child.

Last year, at this very time, I was a physical wreck. The school year was drawing to a close and I carried the weight of our son’s world on my shoulders. I ate, slept and breathed my concern for him and how best to educate and protect him in the then-upcoming year. I shed many, many tears and routinely beat myself up because I felt like I was failing as a parent. I wondered if I was capable of home schooling my son, but the idea was quickly shot down by my husband. The only other option was private school, which would require huge financial sacrifice on our part.

I made application to a school that touted “a fantastic Exceptional Student Education (“ESE”) Program,” only to be told, “I’m afraid your son wouldn’t be a good fit.” I applied to a charter school that serves children with autism exclusively. After a lengthy conversation with the school’s principal, we collectively determined the school’s restrictive environment would not be appropriate for our highly functioning son. Then, after two brick walls, just like Goldilocks, I contacted a school that turned out to be just right for our son. I will eternally be grateful to the Director of Admissions and Development who met with me, then eventually with our son, and said those magic words that changed our lives, “Let’s give it a try. I think we’ll be okay.” I could cry just remembering that day.

That decision was one of the best decisions I’ve ever made. Did I have reservations about the school? Absolutely. I worried a small, private school might not be equipped to teach to a child that requires a little extra help and a teacher who possesses a whole lot of patience. Blessedly, my concerns were unfounded from day one. This small, loving, nurturing environment is precisely what our son needed to thrive. We had a lot of making up to do, both academically and socially. J-man entered fourth grade far behind his classmates academically. Additionally, his confidence had been completely eroded. His teacher invested so much of herself in rebuilding and bolstering his self-esteem in those first few months of the school year. She worked very hard to help him find his place in the classroom and with his classmates. And just as his teacher exhibited patience and kindness, so too did the students. After all, you are the company you keep.

Here we are, eleven months later, and our son now has a squad—his squad. And every time I hear them call his name or see them pull him into the fold, I fight back tears. This year though, they’re tears of joy.

Beach Squad 2

P.S. For all you moms and dads out there who may stumble upon this post, DO NOT GIVE UP and DO NOT GIVE IN. Your child needs you. Fight for them in any and every capacity possible. They need you. And believe me when I tell you, no one–NO ONE–can or will advocate for your child like you can. x

A Life Well Lived

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“Her life was not an easy life.  She experienced heartache and hardship, but it was a life well lived.” This is a phrase I found myself repeating to mourners who came to pay their final respects at my mother’s funeral this week.

I’ve penned more than one post in the past (As is the mother, so is her daughter. Ez. 16:44, Happy Special Birthday, A Very Special Mother’s Day) that offered a glimpse into my mother’s 86 years on this earth.

The Great Depression.  The deaths of two husbands and one infant daughter.  Life as a widow raising four children—two of whom gave her more than her deserved share of trouble (yours truly among them). The deaths of both parents and five siblings—three sisters and two brothers. Decades plagued by the effects of emphysema (chief among them—a susceptibility for pneumonia).  Cancer.  These are a sampling of challenges my mother faced in her 86 years and seven months this side of heaven.

 

Love.  Laughter.  Family.  True, genuine, nurturing and caring friendships.  Travel.  A 25-year career working for folks who weren’t only employers but dear friends as well. Secure knowledge in her place in heaven upon departing this earth. These are the things that made for a life well lived.

Ruth Ann Cassella;  born January 6, 1931 – died August 4, 2017, following a life well lived

Motherhood–a cause for celebration

Motherhood. It’s the most underpaid, yet rewarding job on the planet.   It’s the most difficult task a woman can ever hope to undertake, yet the most innately intuitive undertaking a woman will ever face. Today, we mothers are fêted.

I know young moms, older moms, single moms, two-parent family moms, adoptive moms, foster moms, stepmoms, IVF moms and moms who’ve had their kiddos the “old-fashioned” way. I know moms who parent idyllic, storybook families and moms deeply ensconced in dysfunction accompanied by estrangement.   Motherhood is a tough job and oftentimes a messy business, but we mamas get it done.

I’m blessed to know mothers who, in addition to parenting and running a household, are also nurses, educators, entrepreneurs and business owners, administrative professionals, sales professionals, missionaries, mental health professionals, editors, writers, designers, media moguls, restaurant staff, technology gurus, managers, yoga instructors, athletes, humanitarians, philanthropists, heads of nonprofits, lawyers and accountants. Many of you are not only acquaintances but also dear friends who have taught me much about life and how to live it. Many of you have parented children despite extreme adversity and suffering unimaginable tragedies. You, my friends, have unwittingly taught me so much. You’ve taught me how to remain strong when the odds appear to be stacked against me. You’ve shown me how to walk with hope, faith and grace when times are tough. Through example you’ve illustrated how to love and give unconditionally, when truth be told, I want to stomp my feet and scream in frustration at the top of my lungs. A few of you have rescued me in my darkest hour, throwing me a life preserver just before I went under for the final time. Above all, you’ve taught me how to love and laugh and enjoy each day to the FULLEST. I am grateful for the mothers I’ve met along the way and even more grateful for those I call friend. I celebrate you every day, but today is your day. You celebrate you—in whatever manner you see fit for the queen you are. xo

No language can express the power, and beauty, and heroism, and majesty of a mother’s love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star. ~Edwin Hubbell Chapin

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

Pour it On

Motoring.

Motoring.

I snapped the above photo en route to school this morning. This has become our typical commute, as munchkin has declared he no longer wants to be a car rider. And as long as weather permits, I’m okay with this.  There are so many benefits to this two-mile ride.

Of course, the most obvious benefit is the fitness factor. Jackson and I are both burning calories and building strength and stamina while bathing our brains in awesome mood enhancing, stress reducing chemicals. The benefits don’t end there though. The greatest benefits can’t readily be measured. I do believe, however, they’ll be immeasurable in the long run.

Our twice daily, 20-minute commute amounts to perhaps the richest 40 minutes of my day. I use this time to pour into Jackson’s soul in a manner I am unable to achieve at any other time of day (with the exception of bedtime perhaps). He is my captive; he is my teammate. There are so many elements at play while we make our way to school. We have wet, moss-covered and very slippery sidewalks to contend with. We have elevated sidewalks, driveways and intersections to navigate, which we do so fluidly. I guide Jackson along, subtly yet sternly. With all that’s going on, there is no room for carelessness or wanton disregard for my instruction. Do you know what? He steps up to the plate every single day. He is my captive listener. As I see it, some of the myriad benefits for Jackson in this (literal) exercise are:

  • Learning to rely on someone for guidance
  • Learning patience and grace as we wait to cross driveways and streets
  • Observing my expression of gratitude to drivers who patiently wait for us to cross said streets and driveways, and to the crossing guard for being there to keep us safe every single day, rain or shine
  • Learning how to use all our senses—not solely sight—for safe travel
  • Learning how to accommodate others in our path as we make way for fellow walkers, joggers and bikers
  • Learning to acknowledge (value) others as we greet each and every individual with a hearty, “Good morning!”

The greatest benefit of all, however, is our ability to have meaningful conversations virtually free of distractions. We observe cloudscapes and nature. We talk about God, heaven and this beautiful world He created for us to enjoy. We talk about anything and everything (Montana, family, horses, animals, weather, rocket launches…), unimpeded. I use this valuable time to remind Jackson of the importance of being a good listener, why we need to be kind to others and why he must be a good team member as it relates to his teachers, and peers. I use this precious time to pour love and encouragement into Jackson. I bolster his confidence by pointing out all of the things he has done and is doing right. These 40 minutes are an extremely, extremely valuable opportunity for me to affirm and reaffirm Jackson’s worth as a child of God.

Would I prefer my morning workout be more challenging? Absolutely! As a former (decades long) early morning gym rat, I miss the daily intense cardio workout and strength training I did religiously in my “former” (pre-Jax) life. I can unequivocally promise you, however, those workouts were not nearly as rewarding as my present “work out.” Would I trade it if I could? No way. Not in a million, billion, trillion years. God doesn’t give us what we want. He gives us what we need.

Start children off on the way they should go, and even when they are old they will not turn from it. ~ Proverbs 22:6 (NIV)

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

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