Tag Archives: ASD

Outriding Fear

Salvation – preservation or deliverance from…

synonyms: lifeline, preservation, conservation

I can’t think of a more apropos word to express how riding a bike impacts me and my life. Riding is joy, of course. Riding is health. Riding is nature and beauty and peace. But, it’s so much more than this, too. Riding is my salvation. It affords me the much-needed opportunity to outride all the fears that routinely plague me. What do I fear? I fear the fate of our planet. I fear the fate of civilization. I fear for my children and yours, and worry what lies ahead of them with respect to food, water, and economic security. I fear for my fellow countrymen of all genders, races and creeds. I fear hatred and intolerance are becoming stronger than the power of love, and I worry how this may potentially impact my diverse family and perhaps most importantly my precious son who inherently struggles with acceptance because he’s different than his peers physically, developmentally and emotionally. These are the fears that chase and catch me in my quiet moments. But on the bike I’m stronger and faster than they are. When I ride, I outride my fears. Always. Riding is my salvation.

The Specialized Foundation is now Outride, an organization dedicated to understanding the effectiveness of cycling interventions in improving adolescent lives across the world. Visit their profile to learn more.

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

Fixer

Roughly 892 miles as the crow (and airplane) flies, that’s the distance we recently traveled for a second opinion for J-man’s epilepsy. Judging by the reaction to this news by many folks, this may seem extreme, but Cincinnati Children’s Hospital and Medical Center is one of the top-ranked hospitals for pediatric neurology and neurosurgery for serious neurological problems such as epilepsy, head trauma and brain tumors. They are the best of the best.

Last fall, after of eighteen months of easy-breezing, seizure-free “maintenance,” J-man’s nocturnal seizures returned in full force. After months of unsuccessful tinkering with medication dosages, I felt it was time to seek a second opinion. Hence our travel to Ohio.

At the conclusion of J-man’s initial examination/evaluation and consultation with a pediatric neurologist at CCHMC, the doctor recommended an MRI under sedation and an in-patient EEG that would take place over the course of three-full days and nights. I had a team of prayer warriors praying the EEG would capture a seizure. As fate would have it, J-man did not experience a seizure during his stay in the hospital. Only the erratic brain activity with pre-seizure spikes we know to be continually present was captured.  I liken this to taking your car to a mechanic because of a noise you’re hearing, only for the noise to be inconveniently absent during the mechanic’s inspection. That’s an obvious oversimplification, of course, but you get what I’m saying. (Of course, he had a seizure the night he was discharged from the hospital.)

Our stay wasn’t all for naught, however. We did learn some things about J-man and some of the things that go on inside his busy brain. We learned terms such as slight asymmetry, temporal horns, single punctate focus, frontal white matter, susceptibility artifact, right corona radiate, microhemorrhage, dystrophic calcification, and T2 FLAIR, just to name a few. I was a Google fanatic each morning when a new report appeared in J-man’s online chart. The term that sticks with me most is “prior insult,” as it relates to microhemorrhage and dystrophic calcification. As an adoptive mother, I’ve always wondered about the ramifications of a most likely absence of pre-natal care for J-man’s birth mother, as well as what the first few months of his life were like.

With respect to the EEG, the findings pretty much mirrored previous test results. Abnormal EEG. Focal epileptiform discharges. Focal interictal epileptiform abnormalities that have a high correlation with seizures that are partial in onset. The one bit of news that was news to me is that the discharges occur in the right centeroparietal head region. As odd as this may sound, I always wondered what part of his brain was affected.

Additionally, while in the hospital, we were fortunate to meet with Dr. Donald Gilbert, professor of neurology and pediatrics at University of Cincinnati and Cincinnati Children’s Division of Pediatric Neurology. Both J-man and I wanted to consult with someone regarding the tics he struggles so greatly to manage. What a blessing it was to sit with this man as he explained so thoughtfully and thoroughly what is happening in my son’s brain and how best to help him manage the uncontrollable movements and sounds that afflict him. We now understand that J-man’s involuntary movements are actually  Tourette Syndrome. We also know people with Autism Spectrum Disorder oftentimes have some degree of Tourette Syndrome, too. Dr. Gilbert provided information to J-man’s school as well as valuable information to be included in his IEP. Again, what a blessing it was to consult with him while at CCHMC.

None of this is earth shattering. And, God willing, this is not life threatening. It’s just a change of tack. J-man began a new medication and medication regimen that have absolutely changed his life for the better. He is a different person. The medication he has been on for the past two-plus years was a nightmare. It rendered him listless, fatigued, and unable to process and retain information–horrible by-products for someone who has significant learning challenges to begin with. I am so happy to say, as of this past Friday, J-man has been seizure-free for three-plus weeks. Praise God!

 

 

 

 

 

The last thing I need to mention, is that upon awaking our final morning in Ohio I had an epiphany moment. God spoke to me clear as day. To paraphrase, he said, “You are a fixer, but you can’t fix this. And that’s okay. Your son is perfectly made. You just need to let this be. Love him as he is. There are no surprises where I am concerned. Your son will be just fine.” This divine revelation lifted such an enormous weight off my shoulders. It was freeing. To me, these words confirmed that I’ve done everything humanly possible to get J-man the care he needs with respect to his diagnosis of epilepsy, and there is nothing for me to “fix.” Although I “knew” all of this, what a much-needed reminder that although I’m in charge, I’m not in control.

I thank each and every single one of you for your concern, prayers, positive thoughts and vibes, and support. You have no idea how grateful I am to have you in our corner.  x

B~

 

 

 

Unless…

This.  This photo right here.  You have no idea what this photo represents to G and me.  

Unless you have a child who has difficulties interpreting and comprehending the subtle nuances of social interaction, you more than likely don’t understand the magnitude of this photo.  Unless you have a child who doesn’t “get” the give and take of social interaction, this photo probably seems mundane.  Unless you have a child who doesn’t have a single real and true friend, you most likely don’t grasp the overall import of the seemingly simple interaction depicted in this photo.  Unless you have a child who comes home from school in tears, sobbing that his classmates think he’s the dumbest kid in his class and ostracize him from much of the day’s classroom and playground interactions, you can’t possibly comprehend the joy this photo brings to two concerned parents.   Unless your child pleads with you to “find a friend” for him, you can’t possibly understand how this photo shatters two parents’ hearts into a million tiny shards. 

A friend is something most of us take for granted, yet is so very vital to our complete wellbeing.  We were created to be social creatures.  When that simple, yet necessary component is lacking in our lives we are incomplete.  It’s a vacancy we feel in our soul.  And when you try your very best, oftentimes forcing the situation, the rejection can be gut wrenchingly debilitating.  

This weekend we had the pleasure of spending Friday evening in the company of a family we’ve been promising to have over for dinner for years.  They’re a family we instantly connected with at the skatepark years ago–G with the father, J-man with the son, and I with the mom.  Yet, as life oftentimes does, it got in the way of the six of us getting together.  Yes, G and I had a wonderful time conversing and laughing with “N’s” parents Friday night, but the highlight of the evening was how J-man and “N” related and interacted.  It was a beautiful sight to behold, stopping G and me in our tracks time and again throughout the evening.

Sunday, while out on our 52-mile pedalabout, I received a text from “N’s” mom stating he wouldn’t stop asking when he could see J-man again.  I replied, telling her we’d be back by one o’clock and he was welcome to come over.  The two boys again connected instantly.  They picked up where they left off, engaging in NERF wars, sword fights and playing Minecraft.  Even the video game had serious interaction–communication, teamwork, instructing and encouraging one another and trash talking.  I was in HEAVEN! 

I’m a firm believer in the adage it’s the little things in life that make life so very rich.  This photo is proof of that belief.  Thank you, God, for answered prayers. 

The greatest healing therapy is friendship and love. ~Hubert H. Humphrey 

Unfettered

image

This post is somewhat of a follow up to my most recent post, “Untrammeled,” in which I spoke of the ways off-road biking has impacted our family. In this post, I’m writing to express just how much the people we’ve met along the way have impacted our family.

If you’ve read more than a few Sing. Dream. Hope. Pray. posts, you’re well aware of my thoughts and experiences regarding autism and the challenges and complexities of life as it relates to parenting a child on the autism spectrum. I’ve also written as to isolation (for both the child and parent(s)) as a high-ranking by-product of autism. The past seven years have run the gamut of these experiences—from good to bad and all points in between. Some groups and activities I thought would be beneficial have turned out to be detrimental. Conversely, there have been other endeavors we’ve undertaken with more than an ounce of guarded ambivalence and have been pleasantly surprised at the outcome. Without a doubt, mountain biking falls into this latter category.

I can’t speak for my husband, but for the first time in seven years, I feel like I’m part of a community, or village, if you will. For once, I feel like we’re not alone in this phase of life. Over the past seven years, I’ve witnessed Jackson being berated by adults for his behavior. We’ve been ostracized and literally turned away from places and events, going so far as to have doors closed in our faces. Unless you have a child with developmental challenges that, on occasion, manifest themselves in “undesirable” behavioral quirks and actions (sensory overload=flight response), you simply have no idea as to the stress a family can experience. A “thanks, but no thanks” mentality has been a prevalent theme in our lives. Until now, that is.

Our local biking community unwittingly and unintentionally provides a sense of belonging and inclusion. It’s a “safe” space and place, for not only Jackson but for our family. We’re accepted just as we are—warts and all. In typical Jackson fashion, he has the rule of the roost at our local bike trails. He’s the proverbial mayor of Club Scrub. He knows everyone and everyone knows him. When he’s at the trails, it is his domain. And the folks who share his domain couldn’t be more gracious. If you know Jackson, then you know he is all up in your business. People on the autism spectrum have difficulty realizing and navigating social boundaries, and Jackson is no different. It’s part and parcel of who he is. Blessedly, the folks we meet and spend time with, aren’t offended by this. Hallelujah! For the first time in seven years I’m not making excuses and apologies. I don’t leave the trails with tears of embarrassment, humiliation or indignation.

The grace doesn’t stop there, however. In addition to welcoming and embracing this little trio of merry makers, folks have literally taken it upon themselves to free Greg and me up to ride and participate in events singularly and as a couple by watching over Jackson at the trails. For the first time in years I’ve been afforded opportunities to socialize, participate in conversation and dare I say, make friends. Unless you’ve been marginalized by a life event, you simply cannot comprehend the overwhelming impact this gift has on a person’s quality of life.

For this acceptance and grace I offer my profound gratitude. Thank you, fellow MTBers. You are a blessing.

 

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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.

Daisies and Butterflies

I don’t aspire to be a writer. I have no desire to be a well-known, gal-of-the-moment blogger with a million followers. Lord knows I’m not equipped for any of that. I simply write because sometimes I feel God puts something on my heart I’m meant to share. I’m usually pretty good at following His prompts. The one thing I absolutely do not ever in a million years want to do is pen posts solely about daisies and butterflies. In other words—I want only to keep it real. The good. The bad. The ugly. Real.

I write a lot about munchkin’s achievements. And they blessedly are ever increasing. But my heart was really pricked this past Wednesday at Jackson’s weekly equine therapy session at Hopes, Dreams and Horses. It was a lackluster day at best. The instructor, Miss Kristy, had the same basic commands on repeat this day. She could’ve simply recorded a voice memo and pressed the repeat button, with an amplifier attached. “Sit up straight.” “Butt down.” “Elbows in.” “Heels down.” Hands to pockets.” “Keep those elbows in!” “Keep that butt in the saddle!” “Sit up!” Bless her. No, really. Bless her!

When you have no control, just sit a spell.

When you have no control, just sit a spell.

Jackson has been riding here weekly for two solid years. And he loves it here. He loves horses. He loves to ride. But sometimes, he just can’t put it all together no matter how many times he’s heard it or done it. It’s as if it’s his (let’s be honest without hyperbole) third or fourth time on horseback. These are the days I take a deep breath and remind myself that we’ve come a long way with a long way to go.
Walk
So why am I sharing this non-newsworthy drivel? Because someone out there needs to know that it’s not all daisies and butterflies all the time. It’s two steps forward and one step back. Or one step forward and two steps back. All that matters is that you’re making progress. Whatever that progress is, own it. Own it! Did you hear that? Own it! Don’t let me or anyone else out there whose stuff you read on social media (the interwebs!) cause you to feel less than you (or heaven forbid, your child) are/is.

I’m just sayin’… You’re awesome. Continue to fight the good fight, no matter what that fight is. Just keep moving. It’s gonna be okay.

The only limit to our realization of tomorrow will be our doubts of today. ~Franklin D. Roosevelt