March 9, 2015

Wanting More

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 2:30 pm by autismmommytherapist

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He brushes by me, my eldest son, swatting away the proffered riding helmet held in my outstretched hand. He is singular in his intent, striding over to the woman in the corner with a smile that’s taken over his entire face.

I watch, mesmerized, as my son purposefully approaches a stranger, an action so alien to him my breath catches in my throat.

He pauses in front of her, gazes deeply into her eyes, and rests his head on her chest. I watch as his arm encircles her waist.

She is charmed I can see, only breaks the connection when her adult daughter comes back into the waiting area and slips her arm around her mom.

Justin takes a step back, then emits a loud “eee” as he grabs each of their outer arms with one of his hands.

He smiles ebulliently and looks back and forth into their eyes, communicating his joy at his upcoming horseback riding lesson with every inch of his being.

I am still, watching this new milestone unfold. My son, who is severely autistic and mostly non-verbal, has drawn two people he doesn’t know into his coveted inner circle as I watch in wonder. All too soon the spell is broken, with the women moving on and Justin searching for juice. We move on to our own car, the two of us. I am touched by this exchange, but left wanting more.

I am left wanting so much more.

Not for the first time nor for the last time am I left wondering what is going on in that beautiful brain.

I know until the end of my days I will be left wanting to know his thoughts, his fears, his joys. I’m grateful for what he can express. I’m grateful for what we “just get” without him having to say a word.

But just once I’d like a sentence, a phrase, a sentiment expressed in words or typed.

I want more. It is a wish I keep hidden away, often too painful to contemplate.

He turns and kisses me as he enters the car, his smile sweetening the moment.

And I wonder, as I rev the engine to life, if I will ever get my wish.


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May 28, 2014

Just Horsin’ Around

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 10:23 am by autismmommytherapist

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Six years ago this fall I took my then five-year-old severely autistic son to a POAC (Parents of Autistic Children) event at Rein Dancer, a farm which provides a therapeutic horseback riding program for riders of all disabilities.  I confess I mostly attended to support POAC, as Justin had never shown any evidence of liking animals, and I had a sneaking suspicion he would view riding a horse with as much excitement as eating vegetables (it turns out I was right.)

 

So despite his disinterest in furry friends my mom and I got him in the car and took him out to western Jersey one fall afternoon, and sat him on the gentlest horse of all time with a good deal of cajoling and prodding.

 

The entire ride lasted eight minutes and he tried to dismount three times. I sensed “jockey” was not in his immediate future.

 

Still, some instinct inside of me told me to try again with him, a gut reaction to this day I’m grateful I pursued.  I signed him up for lessons, schlepped him out there, and within a month or two he was enraptured with riding, “eeeing” his little heart out on his steed for a day.  He liked it so much I even found him a therapeutic riding camp he’s attended most summers since, where I discovered something shocking about my son.

 

It turns out my boy loves to perform.  Frankly, he’s quite the ham.

 

On the last day of camp every summer the riders put on a show, the duration of which my son beamed, laughed, and made intense eye contact with me and my mother the entire time.  I had rarely seen him this happy for so long a period, and decided to pursue opportunities for him to perform in other venues throughout the year.  After much research we ended up at Copper Hills Farms in their therapeutic division (Happy Tails run by Lauren Sgroi,) and this past weekend he was able to perform in his first show, all decked out in his brand new riding attire, ready to go.

 

At first, I thought it was going to be a disaster.

 

Justin was agitated from the get-go, sensing that today would be radically different from his general lesson days.  When it was time for him to mount he first rejected his helmet, then finally acquiesced and allowed me to lead him up the stairs to his ride.  He thankfully got on, then proceeded to make his displeasure known for about a third of the show by whining profusely.

 

Then, about ten minutes in, he simply stopped.

 

My aunt and I watched as my boy straightened up in his saddle, took a new interest in his surroundings, witnessed the slightest smile spread across his face.  He did all his trainer asked as she put him through his paces, even answering a question from the judge (Can you say “hi,” yes my son certainly can) that eventually earned him a blue ribbon in one of the three categories.  I saw my son slowly take pleasure in the event, watched as yet another new world opened up to us, one outside of the confines of our home.

 

I admit, by the end I was already thinking ahead to the next event.

 

Eventually the show ended and the riders were led up to the fence for their photo opp (you know I wouldn’t miss that,) and I could see my son was eager to conclude his participation in the program, so we quickly led him back to the barn and freedom.  As we walked back to the car I asked him if he had fun and he shook his head in a slight “yes,” a response for which on many levels I was grateful.

 

I smiled at my aunt as I put him in the car, then backed carefully into the dirt road leading us home.  I looked in my rearview mirror to see Justin rocking out to Stevie Nicks (he is so my child,) and made a mental note I knew for once I’d remember.

 

Justin’s made such progress.  Don’t be afraid to try new things.

 

Hell, just don’t be afraid.

 

And as we pulled into the driveway to conclude part one of our day I let the gratitude wash over me, coupled with a never-ending sense of pride for my son.

 

 

 

February 10, 2014

Back in the Saddle

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 4:15 pm by autismmommytherapist

J Horse 1

The call came as I was preparing dinner, straining gluten-free spaghetti through a colander for me and my youngest boy. I have to pause a conversation about Lego Star Wars to pick up the phone, and as I glance down I see it’s my mom’s cell, so I press “talk.”

After a brief greeting I ask her how Justin’s horseback riding lesson went, and I hear a slight pause, which my imagination rapidly fills in for me. I immediately worry that Justin doesn’t like this new stable, the one with the trainer who I’m hoping will get him to the Special Olympics this fall. My thoughts are no more dire than that.

What my mom says instead takes my breath away momentarily, shocking me as this has never occurred in the almost six years Justin has been riding. “He fell off the horse hon, but he’s okay” my mom reassures me, and then continues with “and damned if he didn’t want to get right back on.”

Knowing my boy, that doesn’t surprise me at all.

Apparently Justin’s horse was startled by another equine friend in the ring, and fortunately my son slid from the saddle right into the waiting hands of his trainer, with only the indignity of his bottom hitting the ground. In the seconds my mom contemplated whether she should risk going inside or not she said he simply stood up, grabbed his trainer’s hand and pulled her toward the mounting block. With the other hand he pointed straight at his horse.

My boy doesn’t need to talk to make himself understood.

Once more I make sure he’s okay, hear his excited “eeeeee” in the background as I wrap up my conversation with my mom so Zach and I can eat our carbs. I tell my youngest that Justin fell off his horse for the first time but wanted to get right back on.  Zach responds that his brother is very brave, and I smile at him in agreement, telling Zach that I think he shares this same trait with his sibling. There is a request for the parmesan cheese I’ve forgotten to put on the table, and as I make my way to the refrigerator I am hit by the magnitude of what has just happened. My son has fallen off a horse. He didn’t cry, fuss, or try to leave. Instead, he got right back in the saddle.

The truth is, that’s what this family does every single day.

I have two children with autism, one severe, one mildly affected. To my everlasting pride (and relief) they are both safe, productive, and happy. I attribute this bounty in part to great teachers and aides, excellent therapists, an involved family, and of course, time and maturity. All of these ingredients have coalesced into a recipe for success, an outcome I am grateful for every day.

But if I’m perfectly honest, it’s falling down and getting right back up again that has been perhaps the most important ingredient in this family, a trait I’m proud to say we all share. I’ve seen this occur after time with Justin, whether it was watching him learn how to ride a bike, conquer an educational game on the computer, or, and most difficult for him, see him manipulate his mouth to form coveted consonants. This kid never gives up, and I don’t believe it’s a trait one can teach. I believe in him it’s innate, a force of nature which propels him on in all his endeavors, one I’m very grateful he inherited from his obstinate and purpose-filled parents.

Truly, the apple doesn’t fall far from the tree.

Soon I am being pestered for cookies from Justin’s equally brave brother, and my reverie is broken as I search for more carbs in our pantry. I’m asked often how our family has made things work, how we’ve managed to create a palatable existence despite the demands of an often difficult disorder. I am loathe to give generic advice to families as everyone’s situation is so different, but here is one universal truth I feel comfortable passing along. No matter what issue you’re facing, if you fall down from the weight of it try your best to brush yourself off, and keep on going. It is the one constant that has always worked for this family.

And my most heartfelt wish is that it works for you too.

July 9, 2012

Horsing Around

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 8:33 am by autismmommytherapist

“Come on Justin, we’re going to horseback riding camp!” I say to the retreating back of my oldest child, in the hopes I’ll lure him away from his DVD player and get him into the car. He stops dead in his tracks and looks at me with a huge grin on his face, then makes a beeline for the door, the contraption he uses to view every Disney movie ever made completely forgotten.

I grab hold of the three huge bags necessary to sustain him for four hours every day this week, and follow closely behind him as he exits the house. He is gleeful as he enters the car, and I’m hoping he remains this way when he realizes we’re not going to the camp he’s been to for years, but the new one I showed him a few weeks ago. I strap him in and turn on the top 40 hits, and he’s immediately moving to the music, happy.

His momma’s hoping he stays that way.

We quickly reach our destination, and Justin looks a bit confused, but still happy with my plan. I have to grab his wrist tightly to keep him from running right into the barn, and with horses and cars as potential obstacles I keep close to him. He sees the woman who is going to care for him for the week and runs excitedly up to her, then turns and pushes me away.

I tell his lovely assistant that this unfortunately is a new method of communication we’re trying to extinguish (in Justin’s mind I imagine he’s thinking, “out with the old, in with the new”), and I follow behind them with gear in tow, as his aide has all she can handle with my impulsive son.

We sequester the items necessary for his survival (lunch, extra clothes, and a million juices and snacks) and I say goodbye to my boy, who gives me the briefest of glances, and looks to his “woman du jour” as if to say “what ya got for me?”. I remind his caretaker that my mom will pick him up today and walk toward my car, happy for Justin, and mostly relieved. There’s no guarantee he’ll like something new, and frankly camp is a luxury, not a guarantee like summer school.

I exhale, and realize just how much I want him to have some “typical” kid experiences in the summer, so that his childhood will mirror mine in just the slightest way. I throw a silent plea to the universe that the rest of his stay here is as successful as his first drop-off.

And a few days in, it still is.

He loves his new camp. Justin is thriving on new challenges, is learning grooming techniques that I hope he’ll carry with him to adulthood, and forging new connections with strangers. The word is he’s wonderful on the horses, shows a tepid reaction to arts and crafts (that hasn’t changed since toddlerhood), and has a smile for everyone.

On the second day of camp he even asked for his mommy for the first time ever on his iPad. Seems as if even I get something out of horse camp.

He’s got a few days left to go, but I’m confident we’ve discovered a new venue that will meet his needs, and make him happy to boot. I couldn’t be happier with the staff at Celtic Charms in Howell, NJ, who have been so kind and responsive to all of Justin’s needs as well as my concerns about attempting a new camp after so many years. They are a non-profit organization which serves individuals with physical and emotional disabilities, and their goal is to teach all components of horseback riding to their charges in a fun and safe atmosphere. Celtic Charms serves the needs of both individuals, and small groups.

Many thanks to all involved in making this program a success for Justin!

Celtic Charms Therapeutic Horse Farm

671 Fort Plains Road

Howell, NJ 07731

(732) 987-5333

September 7, 2011

The Boys of Summer

Posted in Fun Stuff, Life's Little Moments tagged , , , , , , , , at 10:57 am by autismmommytherapist

I recently posted a status update on Facebook that read “Happy School Eve”, and I meant it. As much as I love summer (and I’ve always been a summer girl), there comes a point every season since I’ve given birth where I’m completely over warm weather, long unstructured days with my progeny, and applying sunscreen to said offspring. Sadly, there have been years when my “over point” has occurred in June, which was quite unfortunate for me. This year we made it all the way to Irene, who thankfully left my house and loved ones intact but completely sucked the life out of me (see The “I” of the Storm). I regard this as great progress that I did not succumb to that desperate need to see yellow looming outside my door until the last week in August.

I am really quite proud of myself.

What was profoundly different about this particular hiatus was that both of my children were mostly happy, eager to try new things, and (for the most part) well-behaved. Once I accepted the fact that for the better part of two months I would accomplish nothing other than keeping the kids alive (an inner struggle you would think I would have conquered by now, but is still a work in progress), I relaxed, and truly enjoyed watching them revel in the freedom I so loved as a child.

Over the last few months I had the privilege of watching my youngest son decide he wanted to swim, then conquer the skill in a matter of days. I saw my eldest child master floating in his own pool, as well as take his first tentative steps at attempting an actual stroke. I was witness to Justin’s all-encompassing pride at his equestrian pursuits, and Zachary’s decision to ride the waves solo at POAC’s annual surf day. With the help of my oldest son’s BCBA we were able to elongate Justin’s beach time well past our traditional half-hour stay, and I feel that my boy even grew to enjoy an extended stay on sand and surf again. Last, my husband and I had the pleasure of taking Zach on his first solo Adventure Day”, an outing Zach still speaks about, and one Jeff and I hope to repeat in the near future.

Here are some photos capturing the “highlights” of the season. I feel it’s important to honor these pathways to progress because if someone had told me even two years ago I’d experience a summer such as this, I wouldn’t have believed them. Both boys have made such great strides. Now their mother is relearning how live in the moment.

I hope you enjoy these moments as much as I did. Here’s to a wonderful fall!

(The first time he swam underwater…)

 

(Holding on for dear life)

(The adventure has just begun!)

(The first time he went “solo”)

  

(Always a body in motion)


(Loving the pool this summer!)

(Enjoying being “pushed around” for the first time)

(Mastering the art of the float)

(Thrilled to perform!)

(Relearning to love the beach)


(My beach boy)

(Just two guys out for a swim)

(No caption necessary!)

Hope you had a wonderful summer!