May 29, 2018

One More Try

Posted in AMT's Faves, Fun Stuff, My Take on Autism tagged , , , , at 11:42 am by autismmommytherapist

Your “eeees” resound throughout the farm, and I smile to know how excited you are to show off your horseback riding prowess, how thrilled you are that your parents and brother and grandmas are here to watch you revel in your favorite pastime. I also smile because those “eeees” mean the catatonia is at bay, that what’s started off as a good morning may continue while you strut your stuff.

Today, my smile will be vindicated.

You are always so calm on a horse, have been so since you began therapeutic horseback riding at the tender age of five. You weren’t so thrilled about it at the start (you let us know in no uncertain terms that horses were the devil), but something inside me said to keep at this, and I’m so glad I did. You grew to love your weekly sessions, rocking back and forth with anticipation each week in the car, walking so quickly ahead of me to the barn I had to run to catch up with you.

Your joy was, and is, palpable.

Part of why I pushed you was because I was bound and determined to find something, some hobby or pastime that you would like other than your DVDs and driving around New Jersey on Rent-a-Car websites (while entertaining, it’s not exactly aerobic). Truth be told if I could host a horse in our backyard I would (hubbie, if you’re reading this, don’t freak out), but for now I have to settle for a once-a-week ride. I love the fact that you can do this for decades, can even get your equestrian fix after I’m gone (yes, I’m always thinking ahead).

Somehow, I will find a way for you to ride when you’re seventy-five. I’m just that much of a planner.

If some of you are thinking “no way, no how” could you ever get your son or daughter on a tall animal, perhaps you’re right. The first time we tried when Justin was in kindergarten he needed two people flanking him to keep him on the horse. He started off desperately trying to escape, and by the end of the twenty minute session he was calm and I even saw the ghost of a smile on his face. He certainly wasn’t as enamored of the saddle as he is now, but it was enough for me to see the burgeoning possibilities of an actual sport for my son, something he could do that would stretch him and get him out of the house.

Trust me, it wasn’t always easy to get him out of our home, but that’s another thing we’ve perservered in, and it’s opened up the world to him.

When Justin was little he was so much more difficult to deal with than he is now, even though he’s newly diagnosed with catatonia which brings its own challenges. His sensory issues were much more pronounced back in the day which I’m sure contributed to his angst, but somehow I knew if I started early getting him to go to places and doing activities these locations would become part of his routine, and eventually he would accept them. We pushed the beach, the boardwalks, Great Adventure and even Hurricane Harbor. We eventually even got brave and when he was ten we took him on a plane to Disney, where for a first trip away from home he did remarkably well. The truth is, I kept at it when he was young also because I could still physically remove him from any situation at the time, which at fifteen, is quite beyond me now.

Mommy’s tough, but not tough enough to budge a teenager.

Honestly, it doesn’t matter what the activity or outing is, and you may have to kiss a lot of frogs before you find your proverbial prince. I want you to know I am well aware this isn’t easy. I’ve had trips where I’ve returned with bitemarks all over my shoulders from having to remove my child from a situation. I’ve had bruises on my shins where I’ve been kicked repeatedly for trying to leave a place, been drenched in sweat as I’ve wondered if I was tough enough to get him in the car before someone called the police on me for abducting a child. Often our outings were baptism by fire, with me swearing to myself “never again.”

I’ll tell you a secret. There was always “just one more try.”

Justin has his limits as to where he’ll go, and more importantly, how long he’ll stay. The kid who we used to have to drag off the beach will now only make it an hour (and sometimes it’s work to get him there that long), but he always has a smile on his face when we’re done. I know we wouldn’t be able to have these expeditions if I hadn’t braved his meltdowns when he was little.

Not sure about a lot of things with autism, but of this one I’m certain.

Finally, warm weather is coming, and we’ve managed to slough off a tenacious winter during which it’s easy to stay inside. My advice to anyone starting out with an autistic child is to take errands and outings as seriously as the latest ABA therapy technique your child’s therapist has suggested to you. Start early; start young. Know that sometimes your efforts will be for naught, and your trip will absolutely suck. Regroup, ask for help if you can, and try again.

Never give up. Never give in.

Always give it one more try.


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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.

August 25, 2011

Horsing Around

Posted in AMT's Faves, Life's Little Moments tagged , , , at 9:20 am by autismmommytherapist

It’s 1:59 PM as I turn down the long drive to Justin’s horseback riding camp, and I’m sweating bullets because my son will be performing promptly at 2:00 whether I’m in attendance or not. I’m chastising myself profusely for succumbing to a “bargaining game” with my youngest before I left the house, a choice I made to engage in a ridiculous discussion as to why I had to leave him for the first time in hours, a decision which has subsequently almost made me late. I force myself to slow down as I enter horse country, remind myself that I am here after all, and that my inner compulsion to be ten minutes early to everything is my issue, and not necessary for Justin’s happiness at all. I find an empty spot next to my mother’s car, I watch her put away the phone she was about to use to find out where her usually prompt daughter could be, and exhale.

I decide to let go of “bad mommy” and enjoy the afternoon. This turns out to be a better choice than the one I made while trying to placate my other son.

Grandma and I turn and approach the barn, and I see Justin hanging over the gate, grinning ear-to-ear, ecstatic to see us both. My eldest carries a deep and abiding affection for his father, but he’s always loved his girls, and having us together in one place pretty much constitutes nirvana for him. Couple our presence with the fact he’s going to get to ride a horse again AND perform for us, and my son is pretty much on the moon at the moment, literally eager to get on with the show.

His “women” can’t wait either.

Last summer I wrote about his first foray into horseback riding camp, and I felt compelled to scroll back through my blog and get a sense of where we were then, and where we reside now. I recalled that we had just come off of several months of intermittent illnesses, which ramped up Justin’s OCD considerably. I myself was still battling what I like to call my “annual bronchitis dance”, which generally renders me just ill enough to be annoyed for eight to ten weeks, but remain (marginally) functional. If I’m being perfectly honest with myself, last June I wasn’t in the best of places emotionally from dealing both with Justin’s recurring ear infections, and from being at half-mast myself.

I recall that as I took my seat next to my mother on the unforgiving wooden bench to watch Justin and his horse enact their maneuvers, that I was anxious, and profoundly tired. I recall having to avoid his outstretched hand as he shuffled past me to his steed, because if we made contact he’d be straining to lead us both to the car to start our journey home. It’s a 90 minute round-trip twice a day to this farm, and the sheer logistics of getting my eldest here while figuring out what to do with my then three-year-old had just about combusted my already illness-addled brain.

In other words, come hell or high water, mommy was going to get to see a damn horse show.

In my now (relatively) clear brain I retrieved all of these details as we strode up to the entrance, but this time my son eagerly places his hand in within the circle of the outstretched fingers of the volunteer waiting to escort him to his ride. He straddles his equine friend with ease and begins to perform, the walking back and forth across the barn that now includes him navigating with the reins, as well as the subtle kick required to spur his horse into the trot he so adores. He appeared more in control this year, and his execution of the tasks at hand were slightly more demanding of him than last year’s tricks. I’m told his “seat” is improved, that he sits up straighter in the saddle, is more in harmony with the rhythm of his mount. All of these nuances, these signs of progress are wonderful, so worth the schlepping and the logistics to get him here.

But the real story is his smile.

A year ago he was compliant, happy to perform, and equally content to leave the premises at the conclusion. I had a few shots where I was rewarded with his pearly whites, but generally he was very serious, more sober in his demeanor as he paraded around this old wooden structure. It’s important to me to get a few photos where he demonstrates his joy at each event we take him to, not because they’re “prettier” depictions of him, but because at his core, his is a joyful soul. I’ll do just about anything to get those photos, have been known to evoke Elmo, sing “Twinkle Twinkle Little Star” in falsetto, and contort my body into ridiculous positions to evoke a slight smile, the latter decision being one I generally deeply regret later.

This summer, summoning Cirque de Soleil was not required.

Justin literally didn’t cease smiling the entire show, nor did he stop making eye contact with me or my mother, making certain we didn’t miss a single second. I have it all on video, as well as on our digital camera. I literally had to sift through the stills for this piece just to pick the best ones, and there were so many to choose from, it wasn’t easy. My boy loved every minute of his time to shine. At the end, when I asked him to stand next to the lovely teen-aged volunteer who’d been his virtual shadow all week, I didn’t have to prompt him, or ask twice. He simply sidled into her and draped one arm casually across her shoulders, and flashed that ecstatic grin which means the world to me.

Then he grabbed my hand, and gave me what I’ve come to call “the get me juice now woman” look.

Small steps. Progress. Joy in sharing a moment. It took us almost eight years to get to this place, and it’s been worth every minute of fear, effort, frustration, and sacrifice. My boy is really, truly, happy.

And that reality is really, truly, something.