Tag Archives: developmental delays

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

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

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.

A Grand Passion

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

IMG_8524

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

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

Following Instructions

Following Instructions

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

His favorite horse, Blaze.

His favorite horse, Blaze.

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

Jackson and Blaze.  Unadulterated love.

Jackson and Blaze. Unadulterated love.

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

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

Benefits of equine interaction:

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

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

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

FAIL

FAIL
I’m bummed.  Actually, I’m way more than bummed.  I’m greatly disappointed in myself.  I let my frustrations get the best of me this morning.  I’m 99% sure Jackson forgot the turn of events as soon as he walked through the school doors.  But my reaction to things left a bitter taste in my mouth.  I pulled into school with tears brimming.

My vexation almost always results from what I believe should, at this juncture, be routine.  I get flustered with things that Jackson and I (and his OT) have been working on for what seems like eternity.  To me, dressing (and undressing) should be almost second nature by now.  He’s five, for Pete’s sake.  Truth of the matter is, the act of getting dressed or undressed is simply not natural for Jackson.   When it comes to undressing, shoes are semi-doable, providing they’re Velcro and loose fitting.  He’s good with taking his socks off.  Pants?  If they have a fastener it’s a no-go.  Pull over shirts and tees?  Pretty good, but for the life of me I don’t understand how they become stuck on his head, which results in his spinning around in circles.  Getting dressed?  That’s very often, but not completely, a bust.  (Thank goodness we live in Florida where pull-on shorts, tees and bare feet are the norm.)  This morning’s debacle went something like this.  The jacket went on, yet again, without a shirt.  And the pants went on backward, replete with the zipper in back.  Really?  The zipper wasn’t a dead giveaway?  Doesn’t any of this seem strange or uncomfortable, Jackson?

All this happened after spending the first 40 minutes of my morning making futile attempts to literally physically extricate myself from the grasp of a whiny and whimpering munchkin.  He was bent on me not getting up this morning.  He was adamant I needed to come back to bed with him.  Unfortunately I needed to get to work today.  The end of the month is fast approaching and I have a lot to do between now and the 31st.  Plus, a shower was needed, as I hadn’t had one in a few days.  I know, TMI…

I lost it.  Not literally, but my jaw was set and my teeth were clenched as I set about undressing Jackson and getting him dressed and out the door.  He had to sense I was frustrated.  My touch wasn’t gentle.  It was hurried and silent.  I prayed aloud for the Holy Spirit’s calm to wash over me.  We made our way out the door and into the car and rode in silence for the nearly 25-minute commute to school.  Now here I sit.  My spirit is broken and I can’t think of anything I want to do more than race to school and scoop Jackson up and hug him.

I’m so grateful tomorrow will be a new day and I’ll get a do over.  And blessedly God’s grace and tender mercies will be new too.  Thank you, Lord, for not giving up on me.  I’m so unworthy, yet Your love is faithful day in and day out.   Thank you.  Thank you.  Thank you.

 Lamentations 3:22-24

22 Because of the Lord’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The Lord is my portion;
therefore I will wait for him.”

 


Sacrifice

This post isn’t about me, per se.  It’s a message for someone.  I don’t know who the person is (or people are), but I believe God has pressed it upon my heart to put the following encouragement out there, not necessarily as someone who has been-there-done-that, but as someone who daily IS there DOING it.  I’m talking about parenting a child with special needs—great or small, whatever those needs may be.  Whoever you are, God wants you to know you are not alone.  Not only am I in the trenches with you, but there are countless others out there who get it—and get you.  Of course everyone’s situation is unique, however, those of us battling it out in the parenting trenches know your internal, physical and spiritual struggles.

If my admittedly failing memory serves me correct, parenting a child with special needs is not something I neither signed up nor signed on for when I inked my parenting contract with God.  But then again, few people do.  (There is a very special place in heaven for those whose hearts God has set to seek out and parent children who have special needs.  Bless you.)  As the parent of a child with developmental challenges, pipedreams are no longer in my wheelhouse.  That’s not conjecture; it’s fact.  I’m not seeking sympathy, I’m simply telling you my reality.   I can’t see past today.  My son consumes me from the moment his eyes flutter open at the crack of dawn until he finally drifts off to sleep at night.  His days are fueled by a great deal of anxiety and nearly every second of my day is spent caring for or interacting with him in one way or another.  And the few hours I’m afforded during the school day are spent at my office doing full-time work on a very part-time schedule.

One of the many things I’ve learned firsthand over the years is this:  you cannot effectively parent a child without sacrificing yourself.  Every family’s situation is unique, however, parenting a child with developmental and/or physical challenges greatly magnifies the sacrifice required of parents and caregivers.

I’m less than happy and more than a little embarrassed to admit that oftentimes I look at friends and acquaintances (and even my husband/business partner) through green eyes of envy.  I had—and continue to have—so many dreams and aspirations I fear will never come to fruition.  But I’m learning to have peace with this possibility.  At times it’s been a tough pill to swallow, but our mighty Comforter is balm to my wounded ego.  When I get a case of the feel sorries, He reminds of this:  Jesus’ birth, life and death were foretold; His sole purpose was to be mankind’s Savior—our Redeemer.  He came to earth to be The Sacrificial Lamb.  Period. He didn’t juggle many roles in His short time on this earth.  Nor did he try to find a way to mitigate His purpose.  He had a singular objective.   Jesus never questioned that.  Never.  Ever.

Now, I am absolutely, positively NOT comparing my sacrifice or anyone else’s for that matter, to the ultimate price Jesus paid for you and me.  However, I firmly believe as mothers in general our lives must, to some degree or another, be a living sacrifice for our child(ren).  My experience tells me this is especially true for adoptive parents and parents of children with special needs.   Both bring so much to the parenting table.  We simply cannot have it all.   There are many folks who believe differently.  There’s a host of people out there who either try to convince us we can have/do it all or guilt us into believing we fall short if we don’t aspire to be supermom.  But as the mother of both a soon-to-be 32 year old and a five year old on the autism spectrum, I can tell you it’s an unreasonable goal and trying to do so can be a real spirit breaker.  In this instance I have most definitely been-there-done-that.

So, my dear friend—whoever you are, the only counsel I can offer is take it easy on yourself.  Please, please, please give yourself a break, and while you’re at it, a pat on the back.  You deserve it.  I guarantee it.

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