May 8, 2012

Spring Awakening

Posted in My Take on Autism tagged , , , , , at 1:49 pm by autismmommytherapist

It’s finally “real spring”, which for me entails a prodigious amount of pollen, sunshine, and enough temperate weather to get my kids out of the house, but doesn’t necessarily coincide with the official onset of our fairest season. “Putting away winter” as my youngest son would say has taken on a far more profound meaning this year than most, as our family has just experienced a four-month detour into “siege mode” with our eldest autistic son, a phrase coined so aptly by Susan Senator some years back.

In truth, less than three weeks ago, I was on the phone asking my son’s teacher if his increased aggressive behavior was putting him in jeopardy of losing his spot at his private autism school. Four months, seventy-two hours, and two major medication changes later, I began to see glimpses of the son I knew last fall. That is to say I gratefully saw the return of the child who is known at his educational placement for his generally happy demeanor, and predominantly good behavior as well. I began to witness glimpses of the boy one who rushes up to me at least a dozen times a day and bestows a kiss on my forehead for no reason whatsoever. He’s slowly, but decidedly, coming back to us.

And trust me, I am first to wish a fond farewell to this winter of our family’s discontent.

I have discovered with Justin that his more severe autism “symptoms” seem to be cyclical, that every few years or so we see a regression of sorts, usually preceded by an illness. It’s not just the loss of skills that’s so distressing. It’s also the loss of the peaceful nature he and his teachers, parents, and therapists have worked so diligently for him to acquire.

The absence of his hard-won joy frankly worries me just as much as the troubling dearth of sound that so recently emanated from his throat during speech sessions, the “mmm” and “bbb” sounds that had made a sporadic resurgence over the past year. Thankfully, during these difficult periods, skills other than the ability to conjure consonants and vowels seem to retain their stronghold in his brain, so all of us who work with Justin are not witness to the unraveling of all of our hard work, and of course, mostly his efforts and determination.

And for that, I am eternally grateful.

In general I am a “suck it up” type of girl, a fact which I attribute far more to an ornery genetic inheritance than any calculated fortitude on my part. I’ve found in times of crisis that forging forward with a plan (or several) has been more cathartic to me than talking out my woes, and I’ve often turned solely to my husband, or inward to myself, for solace during the most draining periods we’ve experienced with both boys’ bouts with autism. I’m not certain this is the healthiest path to take, but this method has always enabled me to simultaneously process what’s happening to my family, and blaze a trail through it to secure solutions.

At least, this process worked until this past winter.

This year Justin’s suffering hit me especially hard, truly knocked the wind out of me. Perhaps the depth of my despair was fortified by the stress (and maybe sheer idiocy) of simultaneously directing, producing, and acting in my own play, an endeavor I took on willingly despite any theater experience whatsoever (truly, my kindergarten Christmas pageant was the last time I dabbled within that realm). Maybe it was the fact I hadn’t seen him rendered this miserable since he was a toddler, and couldn’t bear the thought of the return of such an angst-ridden child in a now far larger, and far stronger, body. My malaise could have been triggered because I’m always afraid he won’t transcend these cycles, will be unable to regain the positive nature which resides at the core of his soul.

Or, perhaps I’m just getting old.

Whatever the reason or reasons, I didn’t rebound as I have in the past. My sleep patterns suffered, which for me is catastrophic, as unfortunately I’m one of those boring people who actually requires steady slumber. I became forgetful, finding myself writing things down more than usual, then not remembering I had done so. I lost the joy I’ve relied upon all these years to suck me back into the daily world no matter what is transpiring in our house.

Fortunately, I realized what was happening, and I sought help. I’m talking to a therapist now, and I find that the ability just to share what’s going on in my life for a solid hour is almost as cathartic as writing. I’ve dabbled in the social world again, making plans with friends I’ve put off for a season. I even purchased a hot stone treatment for myself as a birthday gift, and have discovered I am a convert to steaming rocks, ruined for life for more mundane massage. I carved out time, and took care of myself.

And in turn, I was able to take care of Justin, fully, completely, and with all the skills and resources at my disposal.

Parenting is one of the most difficult jobs in the world. Being a parent to a special needs child just ramps up the difficulty quotient immeasurably, can at times seem to be a Herculean task with no end. I cannot emphasize enough how important it is for us to care for ourselves, to tend to our needs even when that task seems nearly impossible. I just read a fabulous post about this subject on Outrunning the Storm. It prompted me to write this piece, and take a look at this year and how I can do things differently, and better, in the future. There is no doubt in my mind that we’ll go through periods like this again. I need to be prepared. There’s so much at stake.

And it’s not only Justin’s happiness that matters. I have to remember my own does as well.

So if you’ve found yourself in “siege mode”, or semi-siege mode, or are just having a difficult period with your child no matter what his or her issues, don’t forget to attend to your needs, as often and as soon as you can. You require that care. You deserve it as well.

And believe me, it’s for your kids too.

April 25, 2012

No Fear of Flying

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , at 9:48 am by autismmommytherapist

It’s 2:00 AM, and through moonlit shadows I see my son standing next to his bed in my mother’s guest room, searching for me in mute appeal. I slide off the window seat that doubles as a sleeping receptacle and walk towards him, with the intent both to comfort him, and to beg him to return to slumber. We do this dance for the next forty-five minutes or so, until sheer exhaustion overtakes him and he clambers back under the sheets, and lets me wrap him cocoon-like in his airplane sleeping bag once more. I slide back into my borrowed bed, knowing sleep may be an elusive fantasy not again realized until many, many hours from now. I resign myself to consciousness, and hope that the airplanes on Justin’s sleeping bag are not the only ones he comes in close contact with in the next twelve hours.

In theory, if we’re very, very lucky, for the first time ever my boy will step foot inside a plane.

My family is hoping to fly to Disney this fall, and I knew that if we had a chance in hell of getting my almost nine-year-old son who has moderate-to-severe autism in the air, we’d better have a practice run. Luckily, my mom had heard that US Air was running a free program with Autism Inclusion Resources out of Philadelphia Airport, one which caters to families with autistic children. The event takes families through every aspect of the travel experience, from checking baggage and security checks, to boarding the plane and baggage claim. Months ago we were able to secure a spot for their spring event (they generally hold it once in the spring, and once in the fall), and at the time I was quite eager to see how Justin held up, and was fairly confident he’d love every aspect of it.

Unfortunately in November he became ill with a garden-variety virus, one that when it released him left behind some unwanted extras. We saw the return of aggressive tendencies which had lain dormant for years, body tics which shook him from head to toe, and a vacant expression that often claimed his countenance for hours at a time. His teachers and home therapists were concerned as well, and after it became apparent these unwelcome afflictions weren’t going to disappear any time soon, we sought help. Four months, three specialists, a debacle of a medicine change, and half a dozen tests later, we were back at square one. We put him on the original medicine that had seemed to improve his life so much, and upped it a bit. Within a few days we saw some improvement.

And as I contemplate that progress on my cushy window seat in the wee hours of the morn, I remind myself we’ve only been dwelling in that more peaceful oasis for a week. Nothing with autism (or life in general), is ever guaranteed.

Eventually strong sunlight banishes the moonbeams from view, and after having caught another hour or two of rest I see my son stretching from across the room, a glorious smile on his face. It’s a good start, and his ebullient mood carries him through breakfast and that semi-harrowing rush hour traffic to Philadelphia International. Thankfully we’ve been well-prepped by Autism Inclusion Resources, the non-profit sponsoring the morning.

I’ve had a phone interview with one of the founders, Becky Jacket, which helped me both envision how the day would unfold, and imparted valuable information to the group as to how to make the day more positive for Justin as well. We’ve been sent a social story, family travel tips (since I fly these days about as frequently as I win the lottery, these were particularly valuable), and a detailed itinerary as to what to expect from the experience. We are as prepared as humanly possible.

But sometimes with Justin, that doesn’t count for much.

I’m questioning my decision to even attempt this excursion about five minutes in, when my son is almost pulling my arm out of my socket in front of baggage check, imploring me to quit this place and return to grandma’s car. I whip pepperoni out of my purse and parcel round slices one by one into his outstretched hand, making him mouth the word “more” after he’s consumed his morsel, hoping it will buy us some time.

It’s his latest favorite snack, and I’m conferring magical properties upon it at the moment, because we’ve made it this far, and it’s suddenly apparent to me how much I want this to work for him. I know, it’s just a family vacation. There are so many families struggling just to pay for services for their autistic kids, and we’re contemplating the Magic Kingdom. I completely comprehend how lucky we are to be in this place.

But honestly, the last four months have been hell. I’m ready for something, anything, just to be simple. And for once, it is.

Cold cuts seem to do the trick for my boy, and he waits patiently as Rick Dempsey, ADA coordinator for Philadelphia Airport, lays out the impending steps for the waiting families and children. There are only a few participants today, one with a child who is similarly affected, and several who are very mild in comparison. Miraculously all of them, including mine, make it through his welcome speech, which is great practice for the multiple waiting periods which occur at any airport. Justin stands calmly next to us as we pretend to check our luggage and acquire our boarding passes (families can actually check their bags, we chose not to), and happily takes my hand as we venture on to security.

This is where I anticipate the most problems for my boy. And once again, he simply blows me away with his compliance.

We sail through the checkpoint, Justin standing calmly at our sides as we reclaim shoes, his iPad, and multiple electronic devices devised to keep him entertained on our journey. I have a bonding moment with an airport volunteer who praises Justin for his behavior, and shares his own story of his son’s autism. I feel my heart-rate slow a bit, my pulse begin to settle for the first time since that middle-of–the-night awakening. My boy waits patiently for the entire group to finish, and eagerly walks beside me to the boarding area, where once again he is required to wait for approximately twenty minutes.

Generally, Justin wants to leave even the most reinforcing destinations after twenty minutes. The fact that we’re still here, pepperoni not withstanding, is a miracle.

Finally, we’re called to board the plane (destination Philadelphia), and my son revels in it all. He wears his seatbelt the entire “trip”. He excitedly consumes the pretzels the kind airline attendants offer to him. Justin and I even take a jaunt to the bathroom when the line clears a bit, and I discover he’s an old pro at navigating that slim space with his mom. I even have the opportunity to thank some staff and tell them how much this opportunity means to us, how grateful we are that they’ve volunteered their time.

They share with me that they feel the same. I am inordinately proud I manage not to bawl all over them in the back of an airplane. Eventually we “land”, and make our way to baggage claim. I walk my son around the corner from my mom and ask her to heave our suitcases onto the carousel, and I show Justin how we relocate our luggage (of course, that is when his mother recognizes it). Our leader thanks us for coming, when it should be us thanking him and AIR.

Every single participant involved, from the volunteers at Autism Inclusion Resources and participants from the Department of Transportation in Washington, DC, to the employee/volunteers from Philadelphia International Airport to the United Airlines crew and the pilot in particular (who flew in on his day off to help), have been wonderful. None of them could have been more professional, or more prepared. Our family is forever indebted.

Finally, the experience concludes. But the ramifications for Justin, the doors this day has thrown wide for him for future opportunities to travel, are just beginning to open. From the McCafferty family, to all those who participated in the making of this day, we thank you from the bottom of our hearts.

Look out Disney. Here we come.

To learn more about the program, check out the Philadelphia International Airport website at:  http://www.phl.org/ada.html/, and scroll down to the section entitled “Airport Autism Accessibility Program”

Email address for the AAAP:  accessibility@phl.org

Email contact for Autism Inclusion Resources (Wendy Ross) wendyrossmd@gmail.com

Email contact for TSA(Technical Services Representative) at PIA (Lisa Bailey) lisa.bailey@phl.org