May 29, 2012
It’s almost summertime, a season which conjures up for me a childhood including vast swatches of unfettered time, staying out late, and one or two bad sunburns which I would always deeply regret attaining. Summer was clearly my unabashed favorite, filled with months of limited responsibilities, freedom, and the luxury of sleeping in without the clarion call of an alarm clock reminding me I had a bus to catch.
Clearly, all of this transpired before I had children.
While summer is still my “Cinderella at the ball”, I now have two little kids to care for during the course of its eleven week stay, and with my particular children, those long days can be challenging. While my boys are wonderful (I have to do a bit of mom bragging here), their particular brand of autism includes a great deal of impulsivity, which has made it difficult for me or any other adult to take them out of the house simultaneously.
My goal (at least for a few more years) is never to have to make the “Sophie’s Choice” of deciding whether to address my eldest’s son’s strong desire to leave a venue in under an hour, or choose to rein in my youngest from whatever event or fun-looking toy might be within his reach. I plan on putting two healthy, and hopefully exhausted, little boys to bed every single night of their childhoods.
I still have goals.
My eldest son is fortunate enough to have an eight-week stretch of summer school included in his IEP, and I know how incredibly lucky that makes both me as a parent, and him as a student. Those extra two months of academics and behavioral routines truly help prevent him from regressing during those hot months, a fact for which I am very grateful. While his program does span most of the summer, we always end up having two or three weeks to fill.
Given that Justin generally doesn’t like to remain anywhere longer than the amount of time it takes to watch a sit-com without commercials, filling that void for him has been a challenge. I’ve found over trial and error that he actually prefers to attend a summer camp rather than hang out with his mother all day (he is nine after all). I’ve been fortunate in that I’ve not only found a few that fit his needs, I’ve also located several resources that have assisted us not only in locating those programs, but have provided a stipend as well.
Trust me, many camps for autistic children don’t come cheap.
I can unequivocally recommend two camps in particular, one designed for neurotypical children but who also accepted my boys as participants, and one created to specifically cater to children with disabilities. The first is Olde Riverside School and Day Camp, located on Herbertsville Road in Brick, NJ. Both of my children have attended this program with their “shadows” (helpers our family has paid to accompany them), and had a wonderful experience.
Olde Riverside’s program harkens back to a simpler time- there aren’t any frills to speak of, just good old-fashioned fun. One of the biggest perks of this camp is their swimming program, complete with certified lifeguard/instructors who teach the children their strokes and water safety on a daily basis. Zachary, my youngest, made great strides in their pool (he liked to make the pretty lifeguards proud of him), and I truly saw his confidence as a swimmer grow by leaps and bounds.
While not a huge fan of the swimming program, my eldest child did enter the water every day and enjoyed the routine of camp, where the activities ranged from crafts to read-aloud, and games that changed about every half-hour. Due to his autism diagnosis he was also required to attend with his shadow, and for five summers he truly enjoyed being a camper.
My boy doesn’t like a lot of things, so this is truly a compliment to the staff.
The second camp I can wholeheartedly recommend is Camp Bridge, located in Wall Township on Herbertsville Road, and housed at the Camp Zehnder YMCA. Camp Bridge is specifically geared toward children with disabilities, and has successfully entertained kids with ADHD and ASD (autism spectrum disorders) for many summers. The camp runs from 8:30 to 3:00 which is convenient to parents, and includes a multitude of different activities to draw in the children. Since it’s located at Camp Zehnder Justin also had access to their pool, a welcome diversion for him during those hot days.
The camp’s owners, Bethanie Raichle (a Board Certified Behavior Analyst who works for several local school districts in Monmouth and Ocean counties), and Cyndee Policastro-Smith (a teacher for Toms River School’s autism program) provide a number of activities for the campers. These range from “morning circle” (which helps maintain the school routine) to arts and crafts, plus one field trip per week.
Another bonus is that I felt Justin required a one-on-one aide to participate, and Camp Bridge was able to supply that individual for me, with an extra fee. My eldest has attended the camp for two summers, and will be happily returning this year for a third. Bethanie and Cyndee truly “get” children with autism, and I always felt as if I was leaving Justin in safe and competent hands.
Of course, camps cost money (what doesn’t), and to that end I have found the DDD (Division of Developmental Disabilities) to be a great resource. A month or two after we relocated to New Jersey when Justin was two I applied to this organization for respite care, and eventually I was granted twenty hours a month. Our provider under this agency is the ARC, and through the assistance of my case manager we have had several wonderful individuals over the years who have truly bonded with my boys (some we’ve found on our own, some were suggested to us through the ARC).
There are several programs for respite under the DDD, and the one we’ve chosen pays our helpers directly. In this way we were able to use our monthly hours to send our helpers to camp with the boys to act as their shadows, which really helped offset the cost.
Another way to underwrite the tuition for camp is to contact the DDD directly, and ask for a list of camps that are “DDD-approved” (this is of course only applicable to families who have applied and have already been accepted for services by the agency). I’m told that every year the list of accepted camps continues to grow.
Finally, when my son’s horse-back riding camp had to close due to financial restraints, I wanted to make sure I left no stone overturned in procuring a new location for him. I contacted the Family Support Center of New Jersey (located in Manasquan), and spent about fifteen minutes on the phone with a wonderful employee who conducted a comprehensive search of therapeutic horse-back riding sites in Monmouth and Ocean Counties. She came up with about a half dozen options, one of which will end up hosting Justin this summer. We’ve been out to see it, and although I can’t recommend it because he has not yet attended, the facilities look beautiful, and the instructors could not have been more welcoming.
I see a post “part two” in my future.
I’ll list phone numbers and websites below, and I hope this piece will be informative to any readers with autistic children, or children with other disabilities who reside in central Jersey. Most of this information I happened to stumble upon from other parents who wanted to share their knowledge, and I feel compelled to pass on these opportunities to others. I’ve felt so fortunate in the connections I’ve been able to make for my children, in knowing that the memories they’ve formed from these experiences will reside with them for a lifetime. I wish you best of luck in that endeavor as well.
Here’s to a great summer.
Department of Human Services/Division of Developmental Disabilities
(732) 863-4500 or (609) 588-2727
Family Support Center of New Jersey
May 23, 2012
Zach barrels through the front door, whips off his shoes, and runs pell-mell into our rec room, intent on making sure all of his transformers are exactly where he left them before we went to the park. My husband is there to greet us, and as Jeff says a “hi Zach” to the blur rushing by, I look up and see a solemn expression on my spouse’s face. That look is unusual enough these days for me to stop my attempts to slough off my sneakers, and instead I focus on him. “What happened?” I ask, holding my breath a bit that whatever has transpired is only a mini-tragedy, and short-lived. “Sarah went to goldfish heaven” Jeff responds, and we both look at each other with resignation, because we’re anticipating the drama that is about to unfold.
It will be Zach’s first brush with “personal death”. I’m pretty sure he is not going to like it.
Ironically, the first time I recall losing anyone or anything in my life also had to do with a gilled entity, specifically one named Grace, whom my mom one day found floating unceremoniously at the top of our tank. I do remember some minor histrionics on my part (which is not unusual for me, Zach comes by his drama honestly), and a proper burial replete with popsicle stick bearing her name in our own backyard. If I remember correctly I insisted on placing her under what I considered “my tree”, and was quite emotional about the entire ordeal. Two days later I trampled her grave marker into the dirt, having completely forgotten the location of her eternal resting place.
Ah, the cruelty of small children.
We remind Zach that we had explained to him that goldfish don’t live very long, and told him gently that Sarah had gone to her final swimming hole. We both brace ourselves for tears, weeping, and an overload of grief. Instead, Zach asks us quickly if Louie, her companion, is still on earth, and we assure him he is. He asks if he can see Sarah, and I look up at my husband hoping that he hasn’t disposed of the body yet, and he looks down at my son and says “sure”. The three of us trudge upstairs together, and Zach enters the guest bathroom quietly, regarding Sarah thoughtfully as he views her laid out on her coffin of Kleenex.
Jeff asks Zach if he’d like to either bury her in the backyard or flush her down the toilet to play with Nemo (that’s how we got him to pee in the proper place, don’t knock that strategy), and he chooses the latter. I tell Zach that when someone dies we usually say some nice things about the person (fish), and tell them what they meant to us. He says Sarah was a “good fish”, and he listens as Jeff and I mumble something about friendship and loss and good times that probably went completely over the head of our five-year-old. Finally, it’s time to send her on her way, and Jeff leans down to my small son and asks him if he’d like to say anything else, or has any questions. He hesitates for a moment, then looks up at Jeff earnestly and asks only one thing.
“Can we eat her?”
Clearly, drama averted.
May 20, 2012
It’s 8:30 on a bright, clear May morning, and I’m grateful we’ve finally had a turn in the weather as I trudge on up to the garage that babysat my car overnight. Zach’s IEP meeting is in an hour, and I know I’ll have enough time to claim my vehicle and make it to his pre-school, but I keep my pace at a good clip just to be certain. It’s only Thursday, but it’s been a long week. Three doctors visits with my youngest child, an unidentifiable illness that thankfully did not turn out to be the “scary alternative”, a nail in my tire driving home from said appointment, and an unscheduled “second spring break” with Zach have all frankly worn me out. I pick up my stride just a bit to get my adrenaline going, because this morning’s meeting is the big kahuna, and I need to be on top of my game.
Today, with my son’s child study team, is the day we talk kindergarten.
I’ve requested all his testing material ten days in advance which is within my rights, and frankly I’m going to be very curious to see what the excellent practitioners who comprise my son’s educational world suggest for next year. He’s made staggering progress since he started there a little over two years ago, back when he was a young lad not even three years of age with a somewhat limited vocabulary, and an absolute obsession with Thomas the Train. Half a presidential term later he gives eloquent speeches on the merits of carnivorous dinosaurs versus the herbivorous species, tells everyone who will listen he wants to be a paleontologist, a firefighter, and a dad, and is fascinated by (but not limited to), the entire Transformer family.
Thomas, of course, is so yesterday.
Given the leaps and bounds he’s made I’m wondering which program they’ll suggest he attend, all of which I’ve seen, and all of which have their merits. Kindergarten is still a half day endeavor in this town, and I feel fortunate that if he can handle it he has the option of participating for two-and-a-half hours daily, which I feel will be exactly the right amount of time for him next year. There are also two other choices for after- mainstreaming, both of which involve a self-contained classroom where he could continue to work on his social skills and his often impulsive behavior, the latter of which his parents, teachers, and pediatricians feel is now his biggest stumbling block to full inclusion.
We’ve recently had Zach evaluated at CHOP, and while he still retains that mild autism diagnosis, the entire team at Children’s Hospital felt that he merited an ADHD diagnosis as well, and that the latter diagnosis now more accurately represented him than the former. As an educator I have to admit I was elated, because there are so many strategies to help lesson some of the more severe symptoms of ADHD (many of which I used in my career), and quite honestly, there are a vast array of medications to help as well. Autism doesn’t have as many medicinal options, as we rediscovered this past spring when Justin became ill, and the drug he was taking seemed to completely stop working.
I’m a girl who likes having choices. I’m happy there will be so many for Zach.
I finally make it to the garage and claim my car, and scoot over to my son’s pre-school which is mere minutes away. As I navigate the side roads of Jersey I admit I’m also curious as to which “label” Zach will receive for next year, i.e. one with autism in it, or one such as “otherwise health impaired”, which is doled out for children who have everything from hearing impairment to ADHD. I don’t care which one he’ll receive, as long as it garners him every service and the type of program he requires to succeed. I’ve learned long ago that labels aren’t the important issue, no matter how formidable they may sound. Services, and the educators who provide them, are the key.
And to date I’m so happy and grateful to say, from Early Intervention to pre-school, this child has had the best.
I make it to the meeting with a good ten minutes to spare, and am soon welcomed warmly into the conference room. There are no introductions necessary as I know all of these educators well, and we promptly get down to business. According to his dual diagnoses he still qualifies for special education services, and becomes the beneficiary of the “otherwise health impaired” monacre, which the team agrees now fits him best. As we move on to his test results I am momentarily distracted by the image of my son four years ago after his regression, where within a matter of weeks he lost his almost all of his words, his strong desire for social interaction, and the innate curiosity that dominated his soul. He’s come so very far from those dark days.
And so much of his transformation is due to the people sitting in this room.
After a lengthy interpretation of the many tests required to secure him a recurring spot in special ed, we discuss which program will best suit my son. A four- hour program is suggested, one which offers him both the challenge of mainstreaming for the first time without the safety net of an aide, as well as a small-class setting in which to work on more of his individual goals. I’ve discussed this possibility with his wonderful case manager before, but I admit I’m holding my breath a bit as I ask for him to begin in the mainstream classroom from day one, as a fully included student. No special accommodations will be made for him, other than that the special education teacher who works in tandem with the regular education teacher will devote some of her energies, and time, to him.
I admit I’m both nervous as to what the team will say, as well as concerned about the prospect of him moving from a class of twelve with a 4:1 teacher/student ratio, to a class of twenty with a ratio of 10:1. I don’t want my son to flounder. I want him to fly. The speech teacher looks at me and says something close to, “Of course, let’s try it and let him rise to the occasion. After all, our goal is full mainstreaming by first grade.” I turn toward Zach’s pre-school teacher who’s nurtured and instructed him for two years, and I don’t see her batting an eye. Of course, we won’t know how he’ll handle things until he actually gets in there this fall. Frankly, a lot can happen in four months, for the good and the bad.
But that full inclusion carrot is dangling in mid-air, and I admit, I’m greedy for it.
We quickly conclude the rest of our business together, with brief discussions on how Justin is doing, as well as inquiries made about new additions to certain child study team’s families. An hour plus later we conclude our meeting, one which has been conducted both cordially, and professionally. It was so apparent when every team member spoke of my son how much they respected, enjoyed, and liked my child. I think of how many unhappy parents I encounter or read about on a weekly basis, and once again I am so grateful for what my child has received, the care and cunning that went into creating his educational program for the past two years.
I head out to my car, and this thought creeps into my very tired brain. I hope the future entails that carrot for Zach, because it gives him choices in life, and because he wants the things that full inclusion entails. I think about how proud I’ll be of him regardless of whether our carefully crafted plan works, because he is simply an amazing kid, and always tries so hard. I think about how I’m equally proud of our older child who will never be a part of that world, who is best served at a private school for autism, and I am guessing will always be best served by that brand of education. I remember that we are just concluding teacher appreciation week, and for a moment I am overcome by emotion, by the bounty that exceptional educators have brought to both of my sons’ lives.
And as I have done many, many times over the last eight years that we’ve been on this autism journey, I thank the universe once again for the glory of a good teacher.
May 17, 2012
It’s Mother’s Day, or what I like to call around here “a sacred 24-hour-period of Mommy-thanking”, which as usual, will commence before dawn. Justin is particularly happy and affectionate this morning which is a wonderful thing, because I realized the night before that I’ve finally succumbed to the virus Zach just had, one which knocked him out for a week.
While I’m a bit disappointed to be out of it on this day of all days, the situation’s not tragic. My own mother is away, so there’s no meal to prepare later in the day. My kids will still give me their beautiful homemade cards and we’ll do something together as a family, because even though it’s technically “my day”, Justin still needs to get out of the house. Most importantly, the nasty bug that has claimed my body waited until after I’d concluded my shopping spree last night with my sister-in-law and niece, permitting me to have my girl-time with them AND acquire the perfect dress for my brother’s wedding.
I still have my priorities straight.
So, today will commence as most Sundays do, although my husband is graciously taking over the early morning shift because I can’t quite stop coughing, and just can’t seem to leave those warm covers. He’ll make my son breakfast and entertain him for two hours until my second child is conscious, at which point I’ll rally and get myself downstairs to help him with the controlled chaos.
Those two hours will rank up there as one of the best gifts I’ll get all day.
We won’t attempt a Mother’s Day brunch out, in part because Zach is still on the gluten-free casein-free diet which seriously restricts what he can eat, and in part because Justin will want to eat and get out of there in about half an hour, which kind of defeats the concept of a meal that’s supposed to be leisurely. We won’t be ordering in either, because I can neither smell nor taste anything at the moment, so meals prepared by someone other than me aren’t really on my agenda. No, except for my annoying cough, today will end up proceeding pretty much as any Sunday does around here, lazy, reasonably quiet, with lots of together time.
That is, except for one glorious, exceptional, “make-my-mother’s-day” moment.
I’ve written many times on this blog how important it is to me and my husband that our boys have a true connection, that each one respects the other, and hopefully finds true joy in their relationship as well. Justin and Zach do have a number of moments together, but I admit that many of them are contrived by me in an effort to foster that bond. There are games of tag around the house, and books from Justin’s early childhood that still bring a huge grin to his face, and a smile to his younger sibling’s too. Zach often tells us what Justin is “saying”, which is generally amusing, as his “communication” is frequently to Zach’s benefit.
Zach is not a kid to willingly miss any opportunity that benefits his own life.
But the key thing here is that while they do connect, almost all of their interaction is initiated by Zach, or by his parents. It’s not that Justin isn’t interested in his younger sibling, or doesn’t love him. Zach has surprised Justin at school several times for various functions, and each time his older brother’s face has absolutely radiated joy, and his excitement at Zach’s presence was palpable. They love each other in their own fashion, but to date, my firstborn has never started the proverbial “brother ball” rolling.
But today, he did. And he even gave up something he loves to do it.
I didn’t get to witness it, will have to live vicariously through my husband’s report of what transpired. I was washing breakfast dishes when in the middle of my task I heard a resounding “That was SO nice Justin, great job!”, and I abandoned my chores to rush upstairs. I took in a typical tableau- Zach sitting in the computer chair, Justin hovering happily next to him with eyes glued to the screen, and my spouse on a bench nearby monitoring the situation.
Jeff turned to me with a huge smile on his face, and said “Without any prompting, our eldest just got out of the chair, grabbed Zach’s hands, plopped him into his seat, and gave him a chance at this game.” I smiled in return and asked him how Zach responded, and he said “he looked at Justin and said, ‘you’re a great big brother’, then sort of pushed him out of the way so he could have a better look at the computer screen.”
That’s my boy.
It sounds like such a little thing, but inwardly I’m thrilled, because I hope it won’t be a one-time event, a glitch in their usual brother-to-brother relationship. I know that sometimes Zach longs for more from Justin. My youngest asks lots of questions about what his elder sibling will be like when he grows up (ones I wish I could answer more precisely), and every few months tells me he’s built a machine that will make Justin talk and play with him.
I’d take out several mortgages just to acquire that bit of technology.
I don’t know if a moment of this magnitude will re-occur for them. So often little pieces of “typical” surface on the turbulent waters of our family’s autism, then they recede, never to be seen again. I’m not sure Zach will once more be the recipient of such a generous offer, a true act of generosity on the part of his older brother. I can wish for it though, and I will.
But no matter what, it happened once. It was their moment, but now it’s mine too. It made my Mother’s Day.
And I sincerely hope this past Sunday, that all of you moms out there had your amazing maternal moment too.
May 13, 2012
I glimpse him through streaky-clean glass as he literally charges up the ramp to the doors of House of Bounce, clearly intent on his destination, flush with purpose. An adult hand opens the door for Justin and he bounds in, then stops dead in his tracks. A look of confusion, then joy washes over his features as he contemplates the fact that his mom has crashed what he thought was just a field trip, and for a few seconds he remains perfectly still. Then he jumps up and down, emits his trademark “eee for happiness”, and runs into my outstretched arms.
My boy is nine years old. Today is his first kid birthday party.
I thought a great deal about what I’d write in this post, considering that nine is a pivotal year in any child’s life. It’s that halfway-mark in childhood, that arbiter of double-digit things to come. I think my son’s age also holds great significance for me because I taught fourth grade for years, and technically, he’ll enter the upper-elementary grade himself this fall. It’s a wonderful year to instruct children, as they’re still generally interested in what their teachers have to say, and usually like to invoke a burgeoning independence that made my job easier. Plus, by that age, they got my jokes most of the time.
This, of course, being a crucial tenet of my career.
I could spend today writing about the things I thought Justin and I would be doing together, the sports events (if he took after his father), the playdates I’d be driving him back and forth to, perhaps camping trips through Boy Scouts (which I’d definitely pawn off on his father). His life trajectory is completely different from the one I projected for him, the one in which when indulging in my most delusional pregnancy states I’d envisioned a literate, bi-lingual pre-school child.
Those hormones will do that to you sometimes.
Justin takes this moment of wool-gathering to remove himself from my embrace, and look me straight in the eyes. I put aside my thoughts of what I’d wished nine would harbor for him, and instead salute my son with a heartfelt “Happy Birthday!” I see the light of recognition illuminate his tawny irises, and as his lips converge in a knowing smile, I am certain he understands why I’m here.
Seconds later his grandma enters the establishment, and with his three favorite women in tow (his teacher completing the triumvirate), he is ecstatic. I’ve wanted to do this for him for years, but for various reasons, the “kid birthday party” has not come to pass. Between out-of-district placements and my son’s increasing desire to leave every destination within the half hour, I really didn’t feel we could pull this off. Due to the latter situation I didn’t think a party would make him happy, and truly, his birthday is supposed to be about him.
Seeing as how I schlepped him around for nine months and have raised him for as many years, perhaps it can still be a little bit about me too.
So when Justin’s school offered to make one of their outings a combo birthday bash for my boy, I jumped on it. His teacher and an aide drove the kids from his class in the school’s vans (seeing as how I barely handle my SUV, I am enormously impressed). House of Bounce basically just asks the parents to show up, which is another reason why I immediately enjoyed he day. Last, I was able to find it without too great a struggle (another point in its favor).
And of course, there’s that smile, that glorious, excited, satisfied smile.
My boy had a fabulous time, and true to his spirit, about an hour after we arrived, he had concluded his business, and was ready to depart. He made it through pizza and Star Wars cupcakes, and of course the pictures that his shutterbug mom had to take. It wasn’t what I’d envisioned his birthday parties would be like all those years ago, both when I was figuring out how to support an extra fifty pounds on a petite frame, and later dealing with a constantly cantankerous toddler. Today is light-years from what I thought my boy’s life would entail, a great divide between the trappings of typical, and what he and his family experience day in, and day out.
But he’s happy. He’s halfway through, and he’s happy. And that’s the best birthday present of all.
May 8, 2012
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.
May 5, 2012
He stands by his instrument with total confidence, sliding into his introduction of Billy Joel’s “Piano Man” with gusto, and ease. A man strumming on his guitar sits next to him, but as I push play on the YouTube clip, all I can hear are the chords ringing out from the keys, the perfect cadence and rhythm of a song I could sing in my sleep. It sounds pretty close to a rendition by the “Piano Man” himself, and I am completely blown away by the artist who is entertaining me. His name is Ethan Walmark, and he is clearly enthusiastic and engaged by the task at hand, utterly lost in the moment, and in the music.
He is barely six years old. He is also a child with autism.
The video clip above apparently went viral this weekend and was seen by thousands of people, including the author of this classic tune himself. Mr. Joel is quoted in washingtonpost.com as saying “I think I like his intro to “Piano Man” better than mine. And this kid plays with a lot more energy than me. Maybe he could teach me a few things.” Of course Ethan’s parents were overwhelmed by the fact that the master himself even saw the clip, much less commented on their son’s talent.
After finding out that Mr. Joel himself had taken the time to respond to what he’d seen, Michael and Allison Walmark are also quoted as saying they were “honored and humbled that Mr. Joel watched Ethan’s video, and took the time to make such gracious comments about his piano playing. If Ethan’s love and joy of music can change one person’s mind about autism, we are happy.”
And really, that comment reflects everything that so many of our families are striving toward. It mirrors our desire to demonstrate to the world all of our children’s gifts, even if they’re not packaged in the form of such a unique and singular talent.
I hope you take a minute to watch Ethan perform, and not just to view the phenomenal technical skill of a boy who’s barely out of pre-school. Ethan, perhaps without knowing it, is a message to the world. Our kids count. They have worth. That really, it’s time to move past tolerance of those who differ from the mainstream, and transcend such a narrow and limiting view. Compassion. Acceptance. Respect. These are the feelings we should be witnessing in our society. These are the emotions which should be reflected in the eyes of all who truly see our children, much as Ethan’s determination and heart are reflected in those ebonies and ivories, which when blended together with care never fail to create a beautiful harmony.
I hope you always continue to “give us a song” Ethan. And as the master himself would say, “we’re all in the mood for a melody, and you’ve got us feeling alright.”
Thank you to Ethan, and to Michael and Allison as well.
The Walmark family will be participating in an upcoming walk for Autism Speaks. If you’d like to donate to this organization, please follow the link below:
May 2, 2012
The wind whips over our clasped hands as we navigate the obstacle course of cars in the parking lot, washing over our windbreaker-sheathed arms like so many ripples on the sea. We’re braving the gusts because my youngest son Zachary, who has mild autism, has begged me to come to the park today. Against my better judgment (because it’s cold as hell out) I’ve conceded, mostly because he asked so nicely, and with such enthusiasm. I glance down at him as we run and ask him what he wants to do first, i.e. the equipment, or just jog around the park and exhaust his mom. He smiles up at me and says “Mommy, the stage first, and you will tell me a play.”
A story’s not good enough for this kid. He wants action. I’d better deliver.
We approach the tiny amphitheatre quickly, and I watch as my small son takes the stairs two at a time, with his mother following at a more age-appropriate pace. I’ve been conjuring up plots in the few minutes I’ve been afforded to “get creative”, and for some reason Ali Baba is stuck in my mind, and I know I’ll build the story line around him. Zach instructs me where to stand and shows me the place from where he’ll be watching, a random spot too close to the lip of the stage for my comfort. I gain his attention, and ask him to adjust. I begin to spin a story of a brother with six sisters who try fruitlessly to render their sibling more like them, and how our protagonist rebels in protest. An evil crone is thrown into the mix, spells are cast, a renewed sense of appreciation for those who are different is discovered.
I know, it’s a running theme with us. Nothing like a good cross-over tale.
At first Zach is striding pell-mell across unforgiving concrete, straying close enough to the edge to be cause for concern, until I instruct him that the rest of the play mush be conducted while he’s stationary. At one point the plot I’ve constructed no longer requires movement, and we end up reclining within feet of one another, Zach rapt with attention, his mother cold but animated in the telling. Minutes pass, and I realize as I reach our fairy tale’s denouement that my son has inched his small frame ever closer to my larger one. Eventually his arms are draped around my shoulders, his face nestled in the crook of my neck as he leans into me. He is secure in that sacred spot where both of my children always seem to fit, no matter what their age.
I conclude my little spiel, one with heroes forged from frailty, and wickedness banished to the farthest realms of a kingdom. Zach remains still and silent for a few minutes longer, cuddled in my embrace. Although I watch the wind whip up dust in the eyes of moms, toddlers and dogs attempting to traverse the park, we are protected he and I, left undisturbed by this structure meant for performance. It hits me that these afternoon interludes are numbered, as he’ll most likely enter a full-day kindergarten program in the fall.
I pull him a little closer.
It also occurs to me how far he’s come in the almost four years since that terrible autumn, a period in which my husband and I witnessed him losing most of his words, watched his gut become a battleground, saw the spark leave his eyes. I would give anything to be able to go back in time and tell those devastated parents of the leaps and bounds he would make, the milestones that would be conquered. I’d inform them that eventually those coveted words would resume, with “why” predominant among his ever-increasing vocabulary. I’d say that his inner spark for life would return in full force, an undeniable fire that cannot be quenched. I’d share that his creativity continues to astonish us, that there will be hard work for him ahead, but no limits on what he can do. Most importantly, I’d reassure those parents that he’d once again be happy, would revel in his childhood, which is all I’ve ever wanted for my sons.
Then, I’d give both of us a really big hug.
Fairly soon the moment concludes, with my child offering his hands once again to be warmed, his extremities in complete opposition to the content of his heart. Soon we will rise and descend those stairs to unyielding tarmac, but for a few moments more, we are content. My son whispers in my ear “thank you Mommy”, and I squeeze him more tightly, conveying my message with sinew and strength, not words.
Zachary, my love, all the world is your stage.