Tag Archives: Aspergers

Play

“Play is often talked about as if it were a relief from serious learning. But for children, play is serious learning. Play is really the work of childhood.” ~Fred Rogers

Why, as a society, have we deviated so far from this mindset?  We push our kids into a tiny, constrained box, and expect them to behave accordingly.  (And that box continually gets smaller and smaller.)  Subsequently, when our children don’t conform to society’s perception of a “good” child, we slap labels on them.  And why?  Is it because we’d rather parent and educate automatons as opposed to vibrant, precocious, inquisitive and curious little beings that take energy, time and effort?  That’s a rhetorical question, folks, but one we seriously need to consider.  As the parent of both a 32 year old and five year old, I say this with authority and from a VERY unique perspective.

Bear in mind, I say this as the parent of a child who definitely has all the classic characteristics associated with high-functioning Aspergers.  BUT, I’ve encountered more than a few medical professionals who recklessly want to add additional letters to his diagnosis.  I also see so many other kids who are simply playful, curious, active, etc., who clearly don’t deserve to be alphabet soup children.  I want to shout, “THEY’RE JUST KIDS, for Pete’s sake! LET THEM BE KIDS!”  We need to take charge and advocate for them.  We really do.  We are THE VOICE for our littles.  Certainly not the schools.  Not the doctors.  Not the busy bodies in the grocery store.  We, the parents, are their voice.

Perseverated is not a bad word

per·sev·er·ate – To repeat a word, gesture, or act insistently or redundantly.

Recently, my husband and I made plans for a “date night” with our son.  Weather permitting (which it didn’t), we planned to go on a picnic dinner the following evening.  Our date was to include the three of us and our dogs at a local dog park.  My husband voiced the idea to our son prior to his bedtime one night this week.  The impending evening’s date was the first thing Jackson mentioned upon waking the following morning.  And according to Jackson’s teacher (the same day), he apparently “Perseverated on needing day to end so he could get to ‘date’ with mom and dad at dog park.”

I’m just spit balling here, but I don’t think the teacher’s note was written in a favorable tone.  And please understand, I don’t think Jackson’s teacher is being overtly critical or mean spirited when she pens notes such as this.  (This wasn’t the first time.)  But I’ve got to tell you, I also do not instinctively see a negative when I see a note such as this—probably to his teacher’s disappointment.  My mind (blessedly) isn’t wired for that.

As challenging as Jackson can be at times, I’m grateful I can see his light shining through.  Additionally, I’m able to remind myself of his difficult origins.  If it sounds as if I’m trivializing matters, please know I’m not.  And I’m also not saying I don’t sometimes lose my cool.  I do.  (See previous post from 1/23/2014 titled “Fail.”)  But I also know I drive myself most crazy when I let people of “authority” into my head.  That’s when I start to panic over Jackson’s “differences” and challenges.  It’s when we receive back-to-back reports of “defiance” and meltdowns that I literally go into overdrive researching autism spectrum disorder (“ASD”), Asperger’s Syndrome and sensory processing disorder (“SPD”).

With a clear head, at least for this moment, let me tell you what I really see when I read a notation such as the one mentioned above.  When I read the word “perseverate,” I see perseverance—a noun meaning steadfastness in doing something despite difficulty or delay in achieving success.

When I see the word “date,” I think of doing an activity with someone you might have a relationship with.

And as for the words “mom and dad,” well those are a given.  And they’re really special, considering Jackson’s origins as an orphan who spent his first five months of life in an orphanage in Ethiopia.  Truly.  Special.  I’m beyond humbled with gratitude over the titles “mom” and “dad.”  It’s one I sport proudly and don’t take lightly.

Sometimes it’s all about perspective.  The definition of which is:  The capacity to view things in their true relations or relative importance.  Thinking back to that same day, and the expectancy of a date night with Greg, Jackson and our dogs and some Chick-fil-A at the dog park?  I confess.  I perseverated too.  That’s the truth.  It’s the absolute truth.

The Family that Skates & Scoots Together…

Jackson and mom--skating and scootingFor the past few weeks, I’ve been mulling over a post about our family’s newest hobby.  At the tender young ages of 45 and 49 respectively, my husband and I have taken up skateboarding.  I don’t mean tooling around, meandering the neighborhood, while taking in the sights.  We’re hanging with the big dogs at our local skate parks.  No.  We’re not crazy.  This came about because of the importance we place on family time.  Jackson loves to ride his scooter, and he’s very good at it.  He’s agile.  He’s graceful. And he’s FAST.  When Jackson scoots around the neighborhood, safety dictates that I run in tandem with him so I can monitor driveway traffic.  This means I’m sprinting for one to three miles at a given time.    One recent Sunday afternoon, we took Jackson to the skate park simply as an outlet for him.   My husband and I decided to give it a try too, so we could make the outings truly about family.  We’ve been hooked ever since.

 

Jackson and dad, learning the ropes.

Jackson and dad, learning the ropes.

I had so many amusing things to say in my originally intended post.  I was going to speak about the fact that I skate with orthotics in my Vans and use an SPF of 50 religiously.  I was going to talk about the fact that it takes a good 15 minutes to get the joints, tendons and bones adequately lubed in my feet and ankles.  And I was also going to mention how tolerant and even accepting most of the young whippersnappers are.  Aside from a few occasionally potty-mouthed teens (which are dutifully kept in check by fearless skate park manager Michelle), we’ve not had a bad experience.  Until today, that is.

Going down (and stimming all the way).

Going down (and stimming all the way).

As is with most Sunday afternoons as of late, we went to our local skate park following church.  Our friend, Paul, joined us.   The four of us were having a great time.  We skated and scooted hard, working up a sweat.  We were all attempting new things and chatting up the really young kids who are beyond encouraging.  Jackson was doing his thing, going up and down hills and riding his scooter around the park.  I was standing on top of a hill with my new “friend,” Sam, when a young boy ascended the ramp and stopped in front me.  The boy was around eight or so.  He mumbled something to me but I didn’t understand what he said.  I asked him to repeat himself, which he did.  He said, “Make him stop.”  I asked, “Make him stop what?”  He said, “Skating.  He’s creeping me out.”  I was utterly taken aback, but replied, “No.  He’s just scooting.”  He said, “No.  He’s not,” and skated away.  I knew exactly what he was referring to.

Sam, also around 8, overheard the conversation and asked me what the boy was talking about.  I simply explained that Jackson sometimes makes noises.  I loved Sam’s muttered reply to the already-gone boy, “Get over it.”  I wasn’t completely surprised this happened.  I expected it.  Someday.  Nonetheless, I wasn’t prepared for it.

You see, Jackson verbally self stimulates.  [http://www.autism.com/index.php/symptoms_self-stim]  He makes sounds.  All.  Day.  Long.  Seriously.  He’s done it for years and rarely stops, if ever.  I took Jackson to the skate park on a school holiday this past week.  I chose not to skate with him, as we were running some errands afterward.  As I watched Jackson from the observation deck, I heard him clearly.  He was uttering endless variations of completely nonsensical words and sounds.  I could see some of the older children looking at him with curiosity.  It was in watching the kids’ reactions that I knew someone someday would say something.  I just didn’t think it would happen so soon.  He’s only five.  Five!  For Pete’s sake, Jackson’s only five.

My initial gut reaction (which I DID NOT act upon) was to say, YOU creep ME out, you little brat.”  THANK YOU, LORD, for reigning in my tongue.   You can come at me all day long; just don’t you dare come at those I love.  I will defend my brood to the end.  I promise you that.

I’m profoundly sad about today’s event.  I get a lump in my throat every time I call it to memory.  I’m not sad for myself, mind you.  I’m sad for Jackson and the unkind people he will encounter throughout his life.  He has such tenderness about him.  Heck.  This is the boy that asks every single person who falls at the skate park (and there are many), “Are you okay?”  He’s kind.  He’s considerate.  He’s loving.  He’s trusting.  And people are going to break his heart and crush his spirit.  That’s the nature of us human beings.  As a whole, we don’t tolerate different no matter the age.  The mere thought of this shatters my heart.

A Grand Passion

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

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

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

Following Instructions

Following Instructions

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

His favorite horse, Blaze.

His favorite horse, Blaze.

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

Jackson and Blaze.  Unadulterated love.

Jackson and Blaze. Unadulterated love.

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

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

Benefits of equine interaction:

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

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

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

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.

Who Rescues Who?

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“Dogs are not our whole life, but they make our life whole.” ~ Roger Caras

This photo is an accurate portrayal of the love our son has for our dog, Geoffrey—a rescue from Ruff World Animal Adoptions in Central Florida.  He is the fourth canine family member (and third rescue) we’ve been blessed to share life with in the past twelve years.

Our dogs—the last two (Felix and now Geoffrey) in particular—have been vital to our family. They have proven to be effective touchstones for our son—having a somewhat grounding influence on him.  For me they have proven to be great stress reducers.  My favorite part of the day is lying in bed at night waiting for munchkin to fall asleep.  Geoffrey snoozes with his front and back legs draped over me while his head rests in my lap.  The room is dark except for the soft glow of a nightlight.  As I stroke the side of his face and run his velvety ear repeatedly through my fingers I can literally feel the stress of the day wash away.  (Studies have shown that petting a dog can lower your heart rate.)  Truth be told, if it weren’t for my husband waiting for me to spend some time with him, I could conceivably stay there all night for the inner peace I’m afforded in that sacred space.

If you are contemplating bringing a canine family member into your home I urge you to please consider adopting from a rescue or shelter.  There are so many wonderful, loving dogs in desperate need of a loving forever home.

An estimated 2.7 million healthy shelter pets are not adopted each year, and only about 30 percent of pets in homes come from shelters and rescues.

U.S. shelter and adoption estimates

  • 83.3 million—Number of owned dogs
  • 20 percent—Percentage of owned dogs who were adopted from animal shelters
  • 3,500—Number of animal shelters
  • 6 to 8 million—Number of cats and dogs entering shelters each year
  • 25 percent—Percentage of purebred dogs in shelters
  • 3 to 4 million—Number cats and dogs adopted from shelters each year
  • 2.7 million—Number of adoptable cats and dogs euthanized in shelters each year

                                                                                     ~ 2013-2014 statistics according to the Humane Society of the US