September 28, 2011
“I’m gonna BEAT you!” my youngest yells as he quickly surpasses me on the stairs, fast-walking because he knows he’ll catch holy hell if he runs. “I have no doubt you’re right, Zach” I reply, because he’s about a century younger than me (some days it feels that way), and because I’m exceptionally tired today. I turn slightly on the step and see my husband haul Justin over the gate we’ve put up to at least slightly hinder his frequent escapes upstairs, and receive an excited kiss from my eldest as he happily ascends. It’s Zach’s most mercurial time of day, and Justin’s best. My eldest boy loves to sleep. He is so clearly my child.
My husband hands me a pile of laundry that didn’t quite make it to the second floor, then casually says, “Hey, I forgot to tell you what Zach said at dinner last night when you were out. He was talking about the ‘Island of Sodor’, then out of the blue he just looked across the table and said ‘Justin, I’m sorry you can’t talk’, and then stuffed a chicken nugget in his mouth”. Jeff looks at my face as I clutch small socks and underwear tightly to my chest, frozen in the moment. He realizes he has greatly underestimated my anticipated reaction as I feel my face redden, and my eyes fill with tears. I can see he’s regretting having told me, and I assure him I’m glad he remembered (I’m not sure I would have retained that conversation for twenty-four hours these days), and make a valiant attempt to get it together. There are after all baths to be drawn, stories to be read, and particularly in Justin’s case, a voluminous amount of hugs to be administered.
In other words, it’s not a good time for mommy to have a moment.
I’ve written before about Zach starting to make connections as we’ve been talking more and more about autism together, what it is, what constitutes the different types, and most importantly to him, how it affects his big brother. He is definitely processing our discussions, because comments about the disorder crop up out of the blue, sometimes in a seemingly random fashion. When we’ve been out in the community, he’s occasionally asked me if little kids who weren’t talking yet had it. After assessing the toddlers’ eye contact capacity, coupled with the amount of pointing going on, I assured him they probably didn’t, were in fact just too young to speak. On another occasion, he asked if two boys getting off the school bus in front of us were brothers, and when I said they might be, he asked which one had autism. Then, of course, there was his declaration of “You have autism just like Justin!” to my friend’s son at our most recent POAC (Parents of Autistic Children) event, which in fact is true, and was thankfully met with a response of “you’re right!” from the family.
Perhaps working on when it’s okay to talk about this should be our next goal.
I know these moments are going to come up more frequently, particularly as Zach is beginning to leave those “running scripts” behind, and engage more often in real dialogue. I’m glad he’s comfortable talking about it, grateful that he feels compassion for his sibling even at the tender age of four. I’m also thankful that he doesn’t view autism as a negative, just something that at this point differentiates people from one another, those who have it from those who don’t. At this point, when asked, he’ll say “autism means you can’t talk and it’s hard to make friends”, a definition which clearly does not encompass everyone with the disorder (and really, what definition does), but is a perfectly adequate description for a pre-schooler to call his own. We will enrich and enlarge it over time, as he matures and is capable of comprehending the many layers that entail an ASD.
After all, we still need to have the “autism talk” with him too.
A pair of socks slips to the floor, and as I reach down to claim errant cotton, I ponder for a moment what I would have replied had I been home. I hope I would have complimented Zach first on his kindness, told him how sweet he was to have comforted his brother. I would have reminded him that on occasion Justin does “talk” to us with his iPad, generally to ask for food or toys, much to the delight of his younger sibling who loves to hear that slim black rectangle speak. I believe I would have shared with him that sometimes communication transcends words, as when his big brother not only permits his hugs but gently returns them, or ruffles his hair when he finds Zach’s antics particularly droll.
I hope I would have had the presence of mind to say it’s okay to be sad that Justin can’t talk, and that sometimes I’m sad about it too. I hope I would have reminded him that the important thing is we all love each other, no matter what.
My husband and I trudge upstairs together, him glancing back somewhat anxiously to take a reading on my mood, me smiling to reassure him that I am indeed alright. I’m certain Zach will bring this up again, and I make a mental note to retain my musings, as they were particularly cogent for a tired girl, and why reinvent the wheel. I breach the top step and am greeted by a boy who still hasn’t tired of playing “gotcha!”, drop Justin’s delicates to the floor, and embrace my youngest in a mighty hug. “I’m proud of you” I tell him, although he doesn’t really know why, as that moment at dinner was so “last year” for him. I am certain, as I breathe in that little boy smell no factory could ever replicate, that we’ll navigate the windy roads of comprehension together, as a family.
And for a moment, that’s all that really matters.
This week’s Gratitude Attitude goes out to two different parties (yes, once again, an overflow of appreciation chez McCafferty). First, to my sister-in-law, for a gourgeous spread of food and family this weekend, and for always remembering to stock fresh supplies for my budding artist. Happy birthday Jenna!
Last, but not least, special mention to POAC for yet again another wonderful family function at Blackbeard’s Cave this past weekend. Next year this family might even be brave enough to try the go-carts… Thanks again everyone!
September 26, 2011
SNAP!!!! The cracking sound of Justin’s tray being disengaged from its seat stops me in mid-swig from my Coke 90, and I quickly abandon my caffeine fix to rush back to the kitchen table. I look down at his plate and take in the completely disregarded toast and bacon pieces I’d hope would constitute breakfast, and insist that he sit down once again and try to eat something. Unfortunately, me and my boy have been at the “breakfast wars” going on ten straight days now, and I’m running out of ideas.
Over the past week I’ve attempted pancakes (the smell of the first burned batch lingered for days), and French toast (met with such disdain it was as if I’d poisoned it). I would have happily made the supreme sacrifice to actually fly to France and procure croissants for him if he’d just eat SOMETHING (I know, I’m that kind of mom), but since that option’s out, the best I’ve been able to do lately is get a piece of bacon into him. I offer him a strip of cholesterol in the hopes he’ll take it, and instead am met with a forceful shove of the hand, followed by my son standing up and in no uncertain terms disposing of his plate. He’s eight now, and only a head shorter than me. Force-feeding him is no longer a reality, so I let him go.
So much for breakfast being the most important meal of the day.
There was a time five years ago when we actually had to force-feed him, which out of all the distressing issues that arise with some types of autism (and there are many), this ranks up there as one of the worst. Justin’s appetite had decreased a bit prior to me and my husband taking a vacation, but our boy has always had a rather ambivalent attitude toward food, and we didn’t think anything of it. We left for five days, and by the time we returned home he had stopped consuming absolutely everything. In only a week’s time he had begun to take on that skeletal, “starvationesque” appearance, and my mom was fairly frantic.
We all figured once his parents returned and routine was restored, Justin would resume eating. He didn’t. He in fact did not even permit a carb to pass his lips until we’d hired an eating consultant to teach us some behavioral tricks, techniques that in the end amount to fancy force-feeding. It took two days, but eventually he ceased trying to attain his perfect modeling weight, and to our delight, even consumed a vegetable.
It never happened again, but I have it on video.
I admit, I am really frustrated with him right now. This is mostly because I know that like his mother, unless he consumes something edible every few hours he’ll be in a bear of a mood, and I don’t like to send him off to school this way. He was up at 5:30 this morning so we have some time to kill, and as he plays the same scene from Despicable Me over and over, I search relentlessly through the fridge and pantry to come up with an alternative. Nothing jumps out at me (this kid even rejected Pop-tarts, which made my husband wonder if he was really his), until my eyes light upon an egg carton, one I’m justifiably afraid might have been there since the last presidential administration.
Thankfully, it turns out to be democratic dairy.
I know my chances of getting him to eat an egg (it’s a textural thing) are about as great as having a child on the spectrum, but since we all know how that turned out chez McCafferty, I figure it’s worth a try. I recall somewhere in the deep recesses of my brain that he’s become a fan of one of the Tastefully Simple spices I use when I pretend to cook, and I decide it couldn’t hurt to try to bribe him with Garlic-Garlic. I whip up two cylindrical orbs, lead a confused boy back to his seat, and present him with a new meal, fork in tow.
Damned if he doesn’t eat every crumb, with the added bonus of independently employing a utensil.
I’m not sure which is more shocking- that he’s actually eating breakfast, using the same fork he’s rejected for six years, or wolfing down a meal his mother herself concocted. At this moment, I admit, I really don’t care. Justin finishes quickly, gives me a smile and quick kiss so full of garlic I know the vampires will stay away, and happily escorts his empty plate back to the sink. I reward him with the hugs, kisses and praise I thank the entire universe that he’s always craved, and quickly start administering the twelve thousand supplements we have him take first thing in the morning.
I savor this victory, as for years around here that word was an elusive guest.
I also remind myself that I have to keep trying new things with him, even if every instinct in my body says the foreign intrusion will be rejected. Over the past few months I’ve seen him spontaneously request toys on his iPad, respond to a game of “chase” with Zachary, and once (albeit mistakenly) consume a piece of fruit and keep it down. Granted, these are all small accomplishments, perhaps not even recognized (except for the fruit consumption) in most typical homes. But here, these milestones are huge, and I want to make certain to notice, and to appreciate, every single one.
And as I catalogue yet one more battle won in the war for a happy, safe, and productive boy, I feel my stomach rumble, head toward the fridge, and remind myself that my pre-dawn Garlic-Garlic idea was pretty appetizing after all.
September 22, 2011
I slide serenely into the MRI “tomb”, white walls embracing me with their sterile closeness and clicking sounds, and I lie still so I won’t have to repeat this test again. It’s my second one in two days, prescribed by the neurologist I’d been to see who assured me the incidences of dizziness and blurred vision I’ve been prone to recently were not all in my little blond head. The good doctor thinks the images resulting from these exams will reveal pinched nerves in either my cervical or lumbar spine, most likely a result of picking up my eight-year-old too frequently, an activity which now needs to cease. I had never realized pinched nerves could have such an effect upon a person. I suspect he’s right, and that Justin will have to become even more independent when disembarking from rides and horses. I am also open to the possibility the good doctor may be totally off-base, and that these dizzy spells I’m experiencing may be a result of years of unyielding, unimaginable stress catching up to me.
The irony, of course, is that things have never been better.
I refer often to my theory that all things are cumulative, that while I attempt to fully deal with and process trying situations as they come, I may not be as good at it as I think. Truly, I make an effort to take care of myself. At meals, there is at least the occasional consumption of a fruit or vegetable. Attempts are made to get seven to eight hours of sleep, when my children and my own body permit me to do so. I’ve incorporated a fairly regular exercise schedule into my daily life, in part because it helps me reach those sleep goals, and in part because much of my writing fodder is gleaned from that pounding of pavement. I schedule outings with my husband and girlfriends because those events make me happy, which renders me a better mother. I also do this because although the boys do take up just a bit of my time, I recognize the importance of carving out some for myself as well.
Unless Shirley Maclaine is right, this is the only life I’ll get. Momma needs some fun occasionally too.
In short, I’ve really tried to live as full and balanced an existence as possible, despite the sporadic tempestuousness of this household. I’ve attempted to model as often as I can what I thought my life would encompass- the rigors and joys of motherhood, work, marriage, and friendships. After years and years of sleepless nights, refusals to eat, pinching of flesh, loss of language, and religious adherence to ritual, my family has finally tempered a truce with my sons’ autisms. The thought that I may not be able to fully enjoy this peace because the last few years are catching up to me, frankly finds me enraged. My fingers are crossed that my eminent neurologist is correct, and that the nerves in my spine have rebelled against their overuse, because there are methods to alleviate those aggravated nerves. And truly, I need to figure this all out, because the prospect of blacking out while with my non-verbal moderately autistic child in public, is not very pretty.
The alternative, that these episodes are simply stress-related, is just not acceptable, although it may be reality. Truly, short of entering an ashram and engaging in meditation all day, I don’t envision much of a serious respite from my life for the next ten, to perhaps thirty, years. I am honestly doing the best that I can, and I’m not really sure my clinician’s suggestion of a warm nightly bath will do the trick, although with just a bit of lavender included, it does sound lovely.
Here’s to hoping the hovering hum of this MRI machine proves it’s not all in my head.
Author’s Note: Thankfully, pinched nerves it was. That pretty x-ray my neurologist displayed for me was a reminder of both how “physical” this life can be with our kids, and how important it is to take care of ourselves regardless of what is transpiring in our lives. I hope this post reminds everyone to do just that!
September 20, 2011
Today’s Gratitude Attitude is dedicated to my local SEPTA (Special Education PTA). I’ve been attending for years, and have never witnessed such a large crowd as at last night’s meeting. Our first get-together not only included parents, but also teachers, administrators, aides, and principals as well. It truly requires an entire continent to raise our kids, and I’d just like to say how appreciative I am that so many different factions were in the house last night. I’d also like to extend my gratitude for all the hard work the SEPTA board does for our families. Thank you for your time and contributions!
September 16, 2011
Major thanks goes out to Vince and Gina Scanelli from Someone Special Needs You (SSNY), for a wonderful event last night. Justin, Zach, and all the children had a great time. We’re really looking forward to the hayride next month!
For more information on SSNY, please see yesterday’s post.
September 14, 2011
When my family returned to New Jersey from Washington five years ago, I knew our daily lives would be taking a very different turn. We traded the Smithsonians for the beach, the monuments for proximity to family, and although at times I truly miss our former existence, there is no doubt in my mind it was the best choice for Justin. For one thing, although the school system where we once lived is nationally recognized, my eldest would never have merited an aide during the early days of his education. I truly believe that having this one-on-one experience in his first years as a student in New Jersey was absolutely integral to his development, and instrumental in the creation of the happy boy I call my son today.
Our family has also benefited greatly from our experience with the DDD (Department of Developmental Disabilities), an agency which affords us the gift of thirty hours of respite care a month, providing me with an extra pair of hands that often enables me to leave the house with both of my kids in tow. There have been other benefits from our relocation as well, including far greater access to social opportunities for the boys through several different organizations, specifically POAC (Parents of Autistic Children), and SSNY (Someone Special Needs You).
I’ve written before about our participation in SSNY, from Easter Egg hunts to Halloween activities, as well as visits from Santa, and carnivals. Vince Scanelli and his wife Gina are the co-founders, and their mission is twofold. First, they provide a monthly arena where children of all ages and disabilities can convene to do crafts and various activities with high school buddies. These teens are carefully selected to pair with the children, and provide them with a wonderful opportunity for friendship. Justin has absolutely reveled in the experience over the four years we’ve been attending the meetings, changing from a child who wanted nothing to do with crafts or teen-agers, to a boy who can’t wait to assemble a leprechaun and hug a pretty girl. He’s grown to love these nights, and in keeping with family tradition, I’ve begun to bring Zachary too.
The second part of their mission includes the creation of a group home on a farm, a topic near and dear to my heart. SSNY has been afforded the gift of twelve acres of land in Colts Neck, and as soon as the “i’s” are dotted and the “t’s” are crossed, construction will begin. It will be a working farm for adults with autism, and will include several green-houses as well. Vince wants to have sheep, chickens and alpaca in abundance (I admit, I had to google the latter, I need to brush up on my farm vocabulary), and hopes to provide a safe and productive atmosphere within which a number of fortunate adults with autism can live and thrive, together.
Amen to that.
SSNY is always on the look-out for new participants for their monthly sessions, and they meet the third Thursday of the month at the Colts Neck Reformed Church, from 6:30 to 7:30 in the evening. They also greatly appreciate donations of any sort toward the creation of the group home. Trust me, it is a daunting task to bring this kind of wide-scale dream to fruition. As Vince and his wife are two of the kindest, most generous parents I have encountered on my New Jersey autism journey, I truly hope they succeed in reaching their goal.
If you’re either interested in attending the crafts sessions or volunteering/donating to the creation of the group home, please click on the SSNY website, and I thank you for your time. The first get-together is this Thursday, 9/15, and all families are more than welcome to attend. Hope to see you there!
Colts Neck Reformed Church
72 County Road 537 West
Colts Neck, NJ 07722
6:30 to 7:30
Third Thursday of the month
Colts Neck Journal article (information on the group home, pages 37 and 38)
September 12, 2011
Last week, for four consecutive days, for a brilliant three hours at a time, I “rediscovered” my life again. Gone was my youngest, who spent the last hundred or so hours of the summer complaining he was bored. This was despite having access to a pool, the beach, three amusement parks, and what amounted to approximately a gazillion playdates, whose scheduling alone made me question my sanity. Vacated was my eldest, who has yet to completely recover post-Irene, as evidenced by some seriously ramped-up OCD, and equally questionable sleeping habits. During that time I attacked piles of crap I’d ignored since Father’s Day, ran a ridiculous amount of errands sans child, and remembered to shave my legs. Even with my husband just down the hallway hard at work, the house was comparatively silent, devoid of the whirlwind of noise that signifies the presence of both of my sons.
School, glorious school.
Every year I send a silent message of thanks to the universe at large for the creation of IDEA, that fabulous law that enables my offspring to have an education, and gives me the opportunity to once again breathe. I can’t thank the parents who spearheaded its creation enough, and can’t imagine having to convince legislators that my children were indeed entitled to attend school despite the differences in their brains from the “typical” crowd. I am well aware that all school systems are still not created equal. I am also aware that many of my fellow parents with differently-abled children are yet engaged in a tug-of-war with their respective districts, desperately attempting to convince administrators and teachers how best to meet the needs of their children. We still have a long way to go until it’s perfect. In some cases, we still have a long way to go before it’s even adequate. But at least, thankfully, education is an option.
For my two boys, for which I am eternally grateful, it’s become a fabulous option indeed.
I have to admit the McCaffertys cheated the gods of first week of school jitters this year, as my eldest not only had the same teacher and classmates, but enjoyed the return of the same phenomenal bus drivers. My youngest just commenced his third year of school with his cherished teacher and dedicated aides, and although his class composition has been altered (a fact which kept him up three straight nights in June) to allow a few of his friends to move on to kindergarten, a sampling of the “oldies but goodies” remained behind. He’s already made a new best friend, a lovely young girl with whom he plans on being betrothed and producing his future five, and I’m keeping my fingers crossed that she’s amenable.
So much for that return trip to Paris someday. Time for an addition.
The truth is my semi-return to sanity would not be possible without the expertise of both the faculties involved, from assistants and teachers to principals, and occupational and speech therapists as well. From the frequent notes replete with great detail about their days to the exceedingly well-executed field trips and schoolwide programs, both my boys are cared for, challenged, and excited by the prospect of learning. My sons are constantly treated with dignity and respect, and valued for the unique qualities of their personalities that comprise the core of who they are.
Frankly, that last sentence is half the battle already won.
So today I’d just like to say thanks to the entire world (we’re so beyond a village) helping to inspire my sons, both for a great first week of school, and what I’m certain will be a fantastic year to come. This family quite literally couldn’t do it without you, and the glorious smiles beaming from the faces of my boys every day they return home to me are evidence of just how hard you work for them, trying to elicit their best. My sons are appreciative. I am grateful. The reduced piles in my house are ecstatic.
And once again, truly, thank you.
September 7, 2011
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!