April 28, 2013
It’s Thursday morning, just a regular day before school starts, and I am trying for what seems the hundredth time this week to figure out something my eldest child will possibly consume for breakfast. Over the course of the past seven days I’ve hawked three different cereals, pancakes, waffles, even French toast, all to no avail.
I hate sending him to school on an empty stomach, but I seem to have run out of options as I whip eggs and milk into the frothy concoction which will soon fill up my stomach. I’ve offered Justin eggs before, which he has regarded with all the enthusiasm of a patient approaching an overdue root canal. Today, just for the heck of it, I turn to look at my tall son who is immersed in his DVD player and ask “Justin, do you want eggs?”, fully expecting no response whatsoever.
And in mid egg-flip, my son looks me in the eyes and nods an emphatic yes.
I fling the spatula down on the unsuspecting stove, and run over to my boy, afraid I’ve misinterpreted the first time Justin has answered a “yes or no” question in our home. I turn off the DVD player and angle him toward me, and pepper him with queries I’m certain he’ll soon find tiresome.
“Is your name Justin?” (nod yes). “Is your name Zachary?” (nod no). “Do you think your mom’s gone crazy?” (okay, I didn’t really ask that one, but contemplated it for a moment there). Truth is, I asked about a half dozen more close-ended questions, and he responded appropriately every time. I did what I lovingly call the “happy language dance”, rescued my almost-doomed eggs, and served my son a generous portion of my take.
First a few spontaneous exclamations of “Mama”; then requesting me unprompted on the iPad; now this. As I drink my orange juice, I admit, I’m a bit verklempt at these new developments.
I recently read a study informing me that while researchers previously thought that the language window swung firmly shut on most autistic children by age four, newer studies have shown that most children on the spectrum do acquire some language. In fact, the study says that almost half go on to be fluent. While we’ve kept Justin in private speech therapy and continue to work with him at home, by the time he turned nine and had shown no real progress, I began to let my dream of him having some semblance of functional speech go by the wayside.
My disappointment was somewhat mollified by the fact he is able to use his iPad quite functionally, particularly in school where he employs the device for requests and academics. In those dark, desperate days of toddlerhood when his primary method of communication was digging his fingernails into my tender flesh, I used to pray for any methodology whatsoever which would facilitate communication, be it technology or a Ouji board (again, those were desperate days).
As he’s grown and has shown great aptitude for various media my fears we’d never share even the most rudimentary standards of language disappeared, and I’ve grown quite fond of ProloquotoGo, the program through which he is able to make his needs known. Still, I admit deep in my soul I longed for a word or two, or even for him to have the capability to answer those simple yes and no queries without running to his device.
Now, he can.
There’s a great article on the Autism Speaks blog by Geri Dawson, outlining new findings about speech in autistic children, and nine other things we know about autism that we didn’t know a year ago. Among those findings, researchers are developing medicines to address the core symptoms of autism, namely communication deficits, social withdrawal, and repetitive behaviors.
Symptoms of autism are now being detected in children as young as six months of age. Prenatal folic acid, taken in the weeks before and after a woman conceives, may reduce a child’s autism risk. We are slowly making progress in deciphering autism’s many mysteries. My son, after a long, sometimes agonizing wait, is making progress too.
His mother couldn’t be more proud.
March 12, 2013
Dusk is fast approaching, and as I swing into Justin’s speech therapist’s driveway I see a shadow rocking back and forth behind her glass door, its rhythm momentarily interrupted by the arc of my headlights as they cut across my son. As I turn off my engine I hear Justin register his approval at my arrival, his happy “eee” cutting across the lawn as I make my way to the front stoop. He is beaming, and I can tell he had a good session by the look on his face, and the similar expression on his therapist’s.
“How’d it go?” I ask, as Justin simultaneously shoves his big red goody bag into my arms and tries to push me out the door. “Today was pretty big” she replied, and I thwart Justin’s plan by putting down the red bag, and giving her my full attention. “While he was waiting for you at the door, he asked for you without prompting” she says with a grin, and mine matches hers, because we both know this is a momentous moment.
My boy wanted his momma, and he asked for me with words.
Justin’s been using the iPad more at home and in the community, and just a few months ago asked for me spontaneously while using the device (I was on a twice yearly shopping expedition with my sister-in-law and niece, it figures). We’ve been practicing the sentences “I want Momma”, “I want Papa”, and “I want Zach” (the last uttered sans “Z”, it actually sounds cooler that way), but to date they’ve always been prompted and repeated out of context, perhaps after teeth brushing, or while waiting for the school bus.
It’s been exciting to hear my eldest child utter a full sentence, fun to hear Zachary (the child who never stops uttering full sentences) cheer his big brother on and encourage him. To me, however, the entire process doesn’t mean much if it’s conducted without meaning, if the sounds are solicited from him when he may very well be thinking about his bed, or popcorn, or the hundredth rendition of “The Very Hungry Caterpillar” that I will likely be reading to him that night. His mother craves context, and today, I believe my son has given it to me.
Today, he waited at the threshold, was asked what he wanted, and clearly requested my presence spontaneously for the very first time. In the movies, I would have driven down the cul-de-sac immediately as the last strains of his short “a” sound drifted into the atmosphere. In real life, it took me a few more minutes to arrive, which gave him time to make a half dozen more attempts to verbally summon me, enough effort for his therapist to make certain she’d heard him correctly. To be completely honest, I’m not sure how many people would comprehend the first two-thirds of his phrase, although with satisfaction I say that his “momma” is clear as day.
It’s taken a decade of work, but every vowel, every hard-won consonant, was worth it.
As always, I have to follow this accomplishment with what I like to call the “autism caveat”, which includes the fact that in the future he may only repeat this charming sentence on demand, or perhaps never again. Although his talented speech teacher could easily get him to recreate the experience for me now I won’t ask her to, because it’s enough to know it happened of his own will, his own ability. For just a moment I recall that studies proclaiming that children with autism who don’t speak by four have recently been proven false; that in fact, more than half become proficient speakers, and two-thirds can master simple phrases.
Then my son once again shoves a heavy, huge red bag into my hands, looks at me with utter urgency, and propels me to the door handle. Time for this momma to cease her musings.
I capitulate to his demands and release him from this house, but I am elated at his triumph, and for a few moments I allow myself to bask in it before I contemplate what I’ll make for dinner. I hug his teacher good-bye, and follow his galloping form back to our vehicle, his own sounds of triumph at escape punctuating the brisk air. I acknowledge we just might have the start of something great here.
And as I buckle him into his seat he grins at me, and I swear he knows exactly what he’s done.
December 1, 2012
It was the tiniest thing. Three little letters, “M”, “O”, and “M” respectively, all painstakingly typed on the iPad keyboard by my eldest son as he worked through a mini-tantrum at home. There wasn’t a parade, no medal nor monument was issued. His efforts didn’t magically conjure up my presence, due to a prior shopping engagement with my fabulous sister-in-law and equally fabulous niece.
The act wasn’t duly noted on CNN (or even Fox, although I feel it should have been). No fireworks ensued other than those elicited by my son momentarily when he discovered all his hard work was for naught. After all, it was just three letters, nothing to get excited about.
Except it was, as it’s the first time Justin has ever generalized a demand from school to home on his iPad keyboard. When I heard the news I practically did a cart-wheel in the middle of the Jersey Shore outlets (which frankly should have earned me a discount SOMEWHERE).
I don’t know that he’ll ever do it again. There is, of course, the annoying little voice plaguing me saying since he wasn’t reinforced for the effort it won’t reoccur (but I slapped that little voice silly as I REFUSE to pair shopping with anything negative). There is also the knowledge that even if he wasn’t devastated that I didn’t come to his immediate rescue from his father and the fun babysitter, he still might never ask for me again.
I killed that little voice too. I’m on a roll.
No, in keeping with a new year coming in and all that jazz, I’m taking a positive spin on this one. His teachers have been working diligently to get him to type, in part because we are all in agreement that this may be his sole method of communication over his lifetime, and in part because his handwriting is almost as execrable as his mother’s.
He’s made similar progress at home as he’s done in class, but we still hadn’t achieved that leap from telling him what to say (he spells and reads fabulously, so no coaching for most words necessary), to having him tell us like it is on his own.
That is, until Black Friday. It truly is a magical day.
So fingers are crossed that 2013 ushers in an entire new world for Justin, a journey I know will begin with simple forays into conversation, and will end no one truly knows where. The really exciting part is that my son left his snack on the table (abandoning food in this family is serious business), searched out his iPad in a different room, and controlled his angst long enough to ask for what he wanted.
It’s been a long nine years (that is an understatement), but he’s finally learned enough self-control to put his emotions aside and try to get his needs met through typical means. I couldn’t have been more proud if he then followed his request up with “Mom sucks”.
Because at that moment, in his world, I did. In my world however, I was haggling over earring prices with a harried sales assistant and having a blast.
As Thanksgiving weekend concludes I have to say I am incredibly grateful for so many things, but sometimes it’s the tiny packages that capture my attention. This is one of them. And my hope for all of you, especially those of you with special needs children, is that many of those pivotal moments are out there around the corner, waiting for you to recognize them soon.
It was just three little letters.
July 1, 2012
It was just a utensil, lying innocuously next to my eldest son’s plate, generally ignored and unwanted. It usually acts as the forlorn mate to the small fork my youngest has used with gusto for about a year now, the stainless steel that replaced the tiny Transformer prongs Zach was loathe to abandon. My husband and I have spent years, (seems like longer,) attempting to get Justin to use it independently. To date, this particular tool has only been utilized when we’ve conducted the ABA dance of work and reward, or in this case, “use your fork Justin, and you get something better from Mommy’s plate.”
Clearly, it’s not tragic if he doesn’t use it regularly. Frankly I’m just grateful that he eats at all, as we’ve had that issue in the not-too-distant past as well. It’s a nicety, like blowing his nose into a tissue and not his sleeve (we’ve mostly conquered that one, thank goodness), but it’s one I’d like him to acquire, since I won’t always be there to cajole him into it. I’d pretty much given up on him using it without a prompt, although I’ve not let go of him incorporating it into his mealtime manners.
There are times however when phones ring, or five-year-old little brothers are particularly demanding, and I just can’t sit with him to insist. Since I was about to depart for an evening of fun (!), tonight was one of those evenings where my head was far more oriented toward charging iPads and signing daily notes than what was transpiring over the kids’ jungle-themed plates. Just as I was washing up perhaps the twenty-fifth dish of the meal (perhaps a slight exaggeration) my husband grasped my arm and pulled me behind the table and Justin, then stage-whispered, “Look!”.
Since I still had at least another fifty things to clean before my exit I gave him a look that said “this better be good”, swung around, and got up on tip-toe to see what miracle had been unveiled chez McCafferty. And miracle it was, as I witnessed my son wielding a fork with diligence and accuracy as he twirled his spaghetti somewhat successfully on a grown-up fork, something he could only have seen me or Zach do on pasta night.
Not only was he using a utensil, he was imitating his sibling. I immediately made a dash for my camera.
Quite often with even a two-foot space between me and my digital, I’m too late to the party. My boy pushes his plate away before I can even take my shot, and begins making his way toward the sink. Jeff informs me he lifted that three-pronged staple to his mouth at least a half-dozen times before abandoning the meal, and he did it without a single prompt, nudge, or nag. We haven’t witnessed a miracle. He isn’t speaking in full sentences, eager to join baseball games with the neighborhood boys, or abandoning the light-up/musical/perseverative toys he’s adored since infancy. This is nothing of that magnitude.
No, it’s just a slight alteration in a routine, one that might not be repeated. But it’s one more tiny step toward some state of independence that I always envision for my son. Quite recently it follows initiating conversation on his iPad, and allowing his sibling’s monster-scaring work-of-art to remain gracing the walls of his room. This minor leap of progress is preceded by my boy recently dressing himself with ease, and gently resting his hand on the top of his brother’s head during story-time. Tiny moments, so easily missed if you’re not looking for them.
Of course, I always am, because after so many years of struggle, they mean everything.
April 25, 2012
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: email@example.com
Email contact for Autism Inclusion Resources (Wendy Ross) firstname.lastname@example.org
Email contact for TSA(Technical Services Representative) at PIA (Lisa Bailey) email@example.com
March 21, 2012
Justin’s school bus grinds to a halt, and as I approach the stairs that will lead him back to my care I hear his low-grade “eeee”, which can either signal happiness, or distress. He lumbers down the stairs and brushes past me, ignoring my query of “Hi Justin, how was your day?”, and immediately runs to the passenger side of my car to see if his “we’re going out” bag is inside. Since we’ll be staying home today it’s not, a situation which evokes in him another torrent of “eeee” sounds, quite vehement in nature.
It’s now apparent to me that the first round of vowel sounds I heard initially were emanating from a very irritated boy.
I thank his lovely bus driver and follow Justin to our front door, which he has unceremoniously flung wide open. I hear him before I see him, my almost-nine-year-old who is sobbing his heart out on my living room couch. I am grateful that Zach is upstairs playing in his room, which buys me some time to try and figure out what my non-vocal child is trying to communicate.
Making my way over to the sofa I trip on his backpack, my visual cue to release his iPad from its confines in his new Spiderman carry-case. My fingers quickly find his communicative device and activate it, in the hopes I can cajole out of him what he wants. As I walk over to my son, iPad in hand, I recall a conversation I’d had with his teacher in the past week. She had shared an anecdote about Justin which gave me some hope that my child might one day attempt more complicated conversations than simply asking for juice, or telling his aide that two plus three equals five.
It seems that not too long ago the company that makes his coveted macaroni-and-cheese lunches saw fit to change their recipe, rendering their creation far creamier than my son would prefer. Although they changed the label slightly to indicate its new “creamy nature”, nobody noticed the difference. On this particular day Justin’s teacher served him his lunch expecting his usual reaction of unbridled enthusiasm (my boy, like his mom, loves his carbs), but Justin wanted nothing to do with his pasta.
As soon as he saw his meal minus lid he pushed it away, making his staple sounds of irritation, clearly unhappy with his designated meal. His lovely teacher of course was confused, as he’d consumed this concoction eagerly for months, and went to retrieve his iPad.
She encouraged him to “just try a bite”.
His response was, “garbage”.
My son’s teacher is not one to give up so quickly, so she tried again.
This time my son’s answer was, “trash”.
Knowing I hadn’t sent in his “back-up lunch” of peanut butter and jelly that day, she gave it one more shot, reminding him in no uncertain terms that he usually loves this meal. She shared with me that he then looked her in the eye, pushed the offending container even further away, and pushed the button for “stop it”. Twice.
My eldest child had just simultaneously disrespected his teacher and held his first conversation with her. Both of us had never been so proud.
I snap back to reality as the corner of a comforter smacks me in the face, and I reach over and free Justin’s own unhappy face, offering him what I like to call “his words in a rectangle”. I admit I don’t have a great deal of hope that this will solve anything, because although he uses the device often at school, he’s far more apt to push it away at home than employ it to get his needs met. Still, I have to try, and hope for a single mand (request) of a wish I can easily fulfill.
I wish it worked that way for my needs too.
I hand him the device, and he surprises me by not shoving it away. Instead he sits up and throws off the now offending blanket. My son presses the “I want” button, scans through a few pages at lightening speed, and presses the word “toast”. He then hits the top bar, which sings out in its slightly robotic voice “I want toast”, and stares at me. To date, this typical single request has been the entire extent of our “verbal communications”.
But today is different. Today I’m incredulous that this boy is longing for a piece of meticulously buttered whole wheat bread, particularly because the slice I offered him this morning ended up in the garbage can. I look at my son and say “Really Justin, you want toast?”, and without batting an eye he leans in towards me a bit and hits a button that says a resounding “yes!”. Then he throws his cover to the ground, stomps off to the kitchen, and takes his place at the table. He’s made things clear. It’s 4:00 in the afternoon, but my boy wants breakfast.
Considering this is the longest amount of dialogue we’ve ever had, you can damn well be certain those whole grains were quickly on the way.
I sat down next to him at the table and watched him consume his snack with gusto, all smiles now, actually giggling when I handed him a napkin. I ponder for a moment what it must be like to be approaching double digits, and not be able to summon the sounds to request a staple of the food pyramid. Pushing that thought away I smile, because he actually did get his needs met, just not in the traditional manner to which most of us are accustomed.
My boy got his toast. And his mom got to talk to him.
Our dialogue didn’t center around what he’d done in school that day. We didn’t even have a simple discussion about the weather. But it’s progress, pure and simple. It’s progress translated from school to home, which is even more important.
It was just a simple conversation between a boy and his mom.
It was hope.
February 29, 2012
After a ten day stomach flu hiatus, I giddily place two happy kids on their respective busses, wave to them, and head back to the house. This was a particularly virulent strain of the winter virus, pretending to disappear at certain points, then once again rearing its ugly head when we least expected it. Jeff and I made bets as to which of us would get it first, but somehow we managed to dodge that bullet (no character in Macbeth had anything on us this week when it came to hand-washing and Purell).
I’ve accomplished absolutely nothing of a personal nature, but on the bright side, every linen in my house has been washed three times, and we’ve discovered the most fabulous rug cleaner EVER (it’s called Kids ‘N’ Pets, and it’s MAGIC). After one last wave to Justin on his yellow chariot I step over the threshold into our foyer, survey the land, and take a deep breath. It is so very, very, quiet.
How I love the sound of freedom.
I have never been very good with large swaths of unfettered time spent hanging out in my abode, so the last week-and-a-half has been fairly torturous for me. I’ve always liked taking the kids places, even insisted on it in the “dark days” when convincing Justin that leaving the house wouldn’t summon the Apocalypse. I was that crazy teacher who actually enjoyed field trips, and loved to travel in my personal time when finances would permit. This last chunk of time, spent mostly following Justin from floor to floor making sure we wouldn’t witness the return of his last meal, was wearing for me.
I started a half-dozen projects I never finished because Justin would leave the room and I’d follow, which meant my visual cue was gone, and I’d forget why I went there in the first place. Other than keeping the two kids alive (which clearly is important), I didn’t feel like I had a purpose. That “down time” is when I start contemplating my kids’ futures, and mine.
And some of those visual images are not so pretty.
Recently I read an article on NorthJersey.com regarding adults with autism and their care, and I was reminded that no matter how difficult some of our days here seem to us, at least both of my children have a safe and stimulating place to go most days of the week. The daily reality for families in New Jersey with adult children on the spectrum is not nearly so bright. My native state is currently experiencing a serious gap between the amount of adult services available, and the number of adults with autism looking to join these programs. One of the largest issues that stymies would-be providers is, of course, funding.
Somehow, everything always comes down to money.
According to the author of the article, Mr. Harvey Lipman, it seems that although the Division of Developmental Disabilities (DDD) does provide some funding for each individual, the truth is the cost of caring for that person far exceeds the monies provided. Since non-profits are only allowed to make up the difference through charitable fund-raising, a group’s ability to create new programs to meet the burgeoning need for them is often stopped in its tracks due to lack of funds.
In a further twist that makes providing opportunities more difficult, the DDD will no longer fund the agencies directly to initiate programs. Instead, funds will be placed directly in the hands of the families themselves. While technically this enables parents to pick and choose among existing programs, the reality is that the current programs may not meet their adult child’s needs.
If that is the case, families are then put in the position of signing up for a program that does not yet exist, hoping that other families will do the same, and then waiting for that program to come to fruition. In some cases, this has meant a year or more where a parent is required to be home with their adult child, day in and day out, with no guarantee that the situation will improve any time soon.
For any adult with autism (or their parent) who wants to get out of the house as much as we do here, this situation is untenable.
There are many divisions remaining within the autism community, although I see the gaps between different factions have lessened over the years, which is encouraging. My kids remain in single digits, but I’m beginning to watch my friends with teen-agers start to contemplate some really difficult decisions, which puts them on one side of the divide, while I remain on the other.
Over the past few years I’ve listened as friends and acquaintances have thrown out these queries to the world: Where will my child live? Will he have anything to do all day other than stream videos on his iPad? Will we have adequate child-care for my adult daughter, and one day be able to attend our parents’ funerals? Will I spend the rest of my life as a permanent caretaker?
Contemplating these issues definitely puts having two kids with the stomach flu into perspective.
Everyone keeps talking about the tsunami, the tidal wave that’s burgeoning now and will continue over the next decade, where my eldest son will one day join the fray. To me however, the concept of a tsunami conjures up images of great noise and chaos, a very public display of uncontrollable destruction wreaked. I think the reality for many families will be no less damaging, but perhaps a lot quieter.
Careers will be relinquished far earlier than desirable so that parents can babysit their adult child. Events will be missed due to lack of child-care, perhaps a wedding here or there, or a seminal event like taking a son or daughter to college for the first time. Worst of all, families may watch their offspring’s skills erode as boredom and malaise set in, and might witness the undesirable return of aggressive or self-injurious tendencies. Perhaps within the walls of families lacking viable options of productive engagement for their adult children, chaos will reign as well.
Or perhaps, it will just be very, very quiet, without the freedom.
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February 14, 2012
Justin rushes in the door, stops for several seconds to ditch his sneakers so my cry of “shoes!” won’t follow him down the hallway, and heads for the refrigerator. Since recovering from the nasty flu that I’m certain made him lose a clothing size he’s been ravenous, and I tend to get out of the way and just let him fulfill his needs. After almost tripping over his coat that I’ll remind him to hang up for the millionth time (in some ways, all kids are the same), I walk into the kitchen with his backpack to check on his progress. He’s already done a refill of the container holding his favorite snack, and is accompanying his meal with his preferred segment of “Up”. I take the moment to reach into his backpack for his iPad and any goodies hidden within, and my hand brushes construction paper bundled in with his softest gloves. I extract it from its warm nest, and smile.
It’s my valentine.
The boys’ teachers have always been great about finding the time in school for the kids to create their exquisite constructions. Over the last few years Zach has presented me with hearts of multiple shapes and sizes, with loving inscriptions proclaiming his feelings for me, and brightly colored drawings to accompany the sentiments. He has proudly proclaimed “he did this!” every single year since he started pre-school, and has made a point of bestowing his gift upon me with great gusto. Zach completely understands the ritual, has hounded my husband two years straight to make sure he got Mommy “something”.
I love this child.
Justin, however, has been a different story. Every year he’s come home with his own version of valentine’s treasure, but try as I might, he’s shown no interest in watching me open it. I’ve tried at mealtimes when he’s more focused. I’ve attempted to have him hand his original creation to me, but to no avail. The giving of gifts has been a non-event to him (receiving being far more fun in his opinion), so I’ve let the Valentine’s exchange go.
Except this year, I don’t have to.
As my son’s rectangular message escapes its confines I see Justin’s head whip around, and the whisper of a smile graces his mouth. He abandons his much-preferred DVD to walk the few steps across the kitchen to me, and gently takes his masterpiece from my fingers. He closes it along the crease, smiles, looks me straight in the eyes, and returns it to my grasp. I open it and exclaim over both its beauty and the message within, the “I love you Mom” I can see he’s had assistance scribing, but has still been wrought by his own hand. Justin throws his arms around me, inclines his head for the “forehead kiss” he sometimes prefers to the real thing, and retreats to his favorite film. Connection made, moment concluded.
Happy Valentines Day to me.
February 13, 2012
I open the back door of our SUV, and instead of receiving a hug from my usually happy and active post-horseback-riding boy, I view instead a morose, still child, with tears brimming from his eyes. I release Justin from his constraints and he slides quickly out of the car, agitated, and heads toward the street. This is the opposite of his Saturday routine, where he generally runs toward the house excitedly, throwing himself across the threshold in pursuit of snacks. Today I have to block him as it looks like he’s trying for tarmac, but just at the lip where street and sidewalk meet, he stops. He puts both hands on my shoulders, gives me a look more of hurt than of anger, and buries his head in my chest.
We make it back to the house, he sliding along reluctantly as I lug boy and bag back to safety, his mother simultaneously trying to puzzle this one out. Even though my eldest can’t talk, and at times there are no icons for what he desires on his iPad, I generally (and thankfully) often comprehend his needs. As the door bangs open I watch him run a few feet into the foyer, stop dead in his tracks, and regard the archway that divides living and dining room. Jeff comes into the room, and we hear a slight sob emanate from my son.
We then witness him run behind the couch, lift up a “sedated” helium balloon held captive by its plastic bag, the one we bought for his brother’s “kid party” that we’re hoping lasts for the family fete too. He sinks onto the sofa in despair, and I whip out his communicative device, cajole him into enough of an upright position to access it, and wait. Justin runs his hands over wet eyes, gives me one last forlorn look, and hits several icons. The rather flat, atonal voice of the iPad queen blurts out “I want. My birthday is. May 12, 2003”. My husband and I look at each other as Justin buries his head once more into our accent pillows.
Justin had seen the balloon before we left. Upon returning, he noted the dearth of cars on the street which would signify his guests’ arrival. The absence of the banner strung along the width of our home, the one always heralding an impending celebration, was the last straw.
My boy thought today we’d be hosting his family birthday party.
Truth be told, numerous thoughts fight for purchase in my tired mind at that moment. I think about how this kid just used visual clues he hasn’t witnessed in a year to make an assumption about this day. I consider how he’s clearly distraught, but hasn’t gone after either of his parents to protest the fact that his birthday will not be celebrated this Saturday. Finally, I mull over how truly unpleasant the rest of our afternoon might be.
I admit, that last one gets a lot of attention.
Despite the fact that the rest of our day may be spent in what I like to call “survival mode”, I have to say, I’m impressed. He didn’t miss a trick. He communicated his needs. And as I watch him take a juice box from my husband’s hand, it even appears he’ll be rising above the insult that his parents won’t be celebrating his birthday three months early.
We always assume comprehension with Justin. But sometimes I think he understands even more than we think he does.
Soon, my boy is responding gleefully to tickles from his beloved dad, and I watch as he lurches off the couch, grasping his father’s outstretched hand. They’ll be heading upstairs to computer games only Jeff knows how to command with any aptitude whatsoever, and it seems that our “gaffe” will be forgiven. As they ascend the staircase my spouse throws me the “we dodged that one” look, and I smile, because to Justin’s credit, we did.
I think back years ago to some really dark days when my youngest was a toddler, and I wasn’t certain he’d ever communicate in any way other than screams and sobs. My mantra for that period was “he understands more than you think, he’ll get through this, together you’ll find a way”. It took a long, long time, and there were more than a few bumps in the proverbial communication road.
But finally, it does appear that my son is finding his way.
January 11, 2012
At first Justin brushes by my little brother, barely gives him a glance as he makes his way across the kitchen to the family room, intent on a destination known only to him. I’d hoped for more recognition on Justin’s part, although my sole sibling only makes it up for a visit about once or twice a year. Since I’ve been too afraid to try a plane ride with my eldest, they really don’t know each other very well. Still, they had forged a true connection this past summer, Justin standing at his uncle’s side, occasionally looking at him to share the joy of a particularly engaging scene on his DVD player. I’d thought he’d at least be happy to see him, would show some sign of pleasure at his presence in our home.
And just then, my oldest child stops, pivots, runs back to my brother, puts his hands on either side of his face, and looks at him with the most intense gaze I’ve ever seen.
I take a few steps toward them, careful not to disturb their time together. Justin smiles up at his newly discovered relative, then looks at me. Again, he looks at my brother, then regards my face. He jumps up and down with joy, emits his standard “eee” for excitement, then disengages from my brother’s embrace. The moment is over. But I know in my mother’s soul that I’ve just witnessed a connection made, a cognitive leap in my boy. He may not comprehend exactly who this tall man is to him. He has however recognized the similarities in our faces, the features we share that make our blood tie unmistakable. On some level, I am certain Justin gets that we “go together”.
And he also gets that this is one more person in his life who loves him.
I can’t prove any of this of course. If I directed him to his iPad he wouldn’t type out “this is mommy’s brother”, or show his comprehension in any other form. I know he understands this man is family just the same. And while I’m thrilled that he’s made this connection, it just makes me wonder how much else he knows that he’s unable to share. This awareness of the gap between what he understands and my ability to discern that understanding remains a sore spot for me, although I continue to hope that chasm will continue to close. He’s made such progress with his new technological device in school, and it’s finally begun to spill over a bit into our home. I’m hoping that his need to connect through the written word will increase over time. All we can do is give him opportunities, and wait.
I put those thoughts aside however, because at the moment we’re engaged in a rare opportunity in and of itself- my mother, my brother, my husband and my children all in the same space, willing and able to interact with one another. It’s about as rare an occasion as a solar eclipse, or my going an entire day without consuming chocolate. I need to get back into this moment, to recognize its incalculable worth, and just enjoy.
And as I watch my oldest son return to his uncle for a second round of hugs, I do just that.