August 30, 2010
A Call for Support
I’m not on the computer as much in August, what with summer school having concluded and having to actually parent at least one child most of the day. Early last week however I did have the opportunity to check out postings from my favorite bloggers, and became aware of a chilling incident that took place in nearby CT over the course of several months. It seems that one of the daughters of Kim Stagliano, a well-known autism activist in our community, had been systematically abused by a bus aide (an adult) during her bus rides to and from school. The little girl is autistic, and was further described as “pre-verbal”.
She is nine years old.
This story, as do many in the news these days, simply made me sick. It reminded me of something I learned while teaching in VA years ago, that almost half of all disciplinary infractions occur in some way during transport to and from home and school. I cannot tell you how many times I was about to mark a kid absent when I got a call from the office telling me that particular child would be gracing the principal’s presence while a conflict was sorted out.
None of said conflicts ever involved the bus aide or driver.
Believe me, I know that abuse of this sort, or abuse carried out by children, is not limited only to our most at-risk populations. Any type of teasing or bullying can have severe long-term effects on the emotional well-being of a neuro-typical child as well, can create lasting deficits in self-esteem that are difficult to rectify. My heart goes out to any child who suffers through this, and I hope the ramifications of choosing the path of cruelty for the offenders are swiftly and harshly dealt each and every time.
What made my gut clench however, as I read through Kim Stagliano’s account of what transpired (and I’m asking you to do the same), was one tiny hyphenated word, a detail that might have been lost by some when reading her post. That word is “pre-verbal”. It means her daughter couldn’t tell her what was happening to her, had no way to convey the horrors awaiting her each day, every day, on a simple ride to school. If it weren’t for modern technology and the video camera installed on the vehicle (which, by the way, should be mandatory for every bus), her parents might never have known what was happening, might have wasted precious time investigating other individuals to attempt to discover who was leaving the bruises and injuring the fingers of their child.
Again, I must reiterate. She is nine years old.
So, I’m asking anyone who reads this post over the next few days, to please refer to the link above, read about what happened, and post a reply if you are willing. Writing about such terrible events, and bringing said events to the media’s attention, will not eradicate the abuse of minors. There are people in this world who are hell-bent on hurting others, specifically focusing their vileness on our most vulnerable populations. We simply cannot stop them all.
But we can try. And if even one person becomes aware that yes, indeed, you can be caught and brought to justice for inflicting your own self-hatred on others, we will have done our jobs. Perhaps, with your assistance, this awareness will prevent my children from suffering such a fate.
Perhaps, instead, it will be yours.
August 27, 2010
Signs
I’ve never been one to believe in signs (ESP and ghosts, sure, signs, hell no), but I’m beginning to wonder if someone, anyone up there, is actually trying to tell me something these days. My curiosity has been piqued by two specific ones, placed like bookends on either side of my town, words I am forced to confront almost daily in my travels. The first is a slightly doctored version of a stop sign, with the added bonus of the graffiti-scrawled words “DON’T” and “BELIEVING” scribed in the appropriate places on the familiar octagon. The second sign is one I confront every time I’m headed back from the boardwalk. Since I’m there so often, particularly during the summer, I frequently find my eyes gravitating toward a docked boat placed conspicuously near the road that proclaims to all who pass, “IT IS WHAT IT IS”.
I should mention that this boat has been grounded since at least the former presidential administration.
It occurred to me the other day that these two slogans perfectly sum up how I attempt to deal with the way autism has infiltrated our daily lives, the battle I continue to wage in my head as I try to move from acceptance to peace with it. When I think back along the last seven years I can acknowledge that many of my battles took place in “real time”, as my son and I were often involved in actual flesh and blood conflict. Over the years we have engaged in mortal combat over eating, sleeping, toilet training, leaving the house, not leaving the house, and trying to reduce the amount of pinching behaviors so my body didn’t constantly emulate that of a tye-dye shirt gone horribly awry. These conflicts were real and unavoidable, and I “fought to the death” with my dual commitments both to sticking with a demand, and saying no and meaning it. I knew that each issue that arose had to be conquered, exterminated, that the happiness of my son, the happiness of my entire family, depended on it. As a result of this hard work conducted not only by his family, but by multiple teachers, aides, therapists, and consultants, my eldest is predominantly a peaceful soul now. Every second of our prior conflicts was worth it for us to have reached this point.
I feel compelled to admit however that perhaps an equally odious battle has been fought along the way as well, one not played out before me with my child, but instead conducted in my head. Even when life in my household transpires as smoothly as it possibly can, I find myself constantly anticipating future problems, often trying to imagine what could happen next and taking steps to prevent issues from arising. Sometimes I feel as if this prevents me from fully engaging in the moment at hand, and I know that if I don’t snap myself back into the present I’ll mourn these missed opportunities to observe and connect, regret my inability to let the worries go. I recently said to my husband that I wished someone could have told me six years ago when Justin was diagnosed that we’d eventually be inhabiting the place we are now, that we would one day finally achieve a kind of peaceful détente. He turned to me, smiled, and said “Kim, fourteen years from now, when hopefully we’ll have a wonderful job for Justin and a safe place for him to live, you’ll be looking back wishing someone had told you that as well.”
Touche.
So, I’m trying, really giving it a go this time now that we’ve attained a certain measure of consistent peace in our household with both of our boys. I am dedicated to attempting to create my own peace treaty, to give myself that gift of palpable release. After all, events in my life will play out as they will, and the reality is I have very little control over how it will all work out anyway (even though I tell myself I do). I’ve been working on shaping my sons’ behavior for almost a decade now, it’s time to conduct some fine-tuning of my own. Wish me luck, and I wish the same for all of you.
It is what it is, but don’t stop believing.
August 26, 2010
Guest Blogger Thursday
Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist
Today’s guest blogger is Brian Carr, a family friend, lawyer with a heart, and an exceptional writer to boot. Brian (and his lovely wife Jeanne) were two of the innocent bystanders I conscripted to read my original manuscript last year, and the fact that they still speak to me is a testament to our collective friendship. There are some wonderful insights in his missive today, and frankly, I think multiple copies of the second portion of this piece should be dispensed to all parents whose children receive an autism diaganosis so they can pass them out to friends and family (it’s just that good). Many thanks to Brian for giving up sleep to write this (I would never be that nice), and enjoy!
To Guest Blog or Not to Blog. By Brian Carr
“How’d you like to guest blog?” Kim asked my wife and I. That hadn’t taken long. We’d barely sat down with a drink and some chips, having shunted the kids to the pool, when Kim was already asking this question.
I suppose it was my own fault in a way. Saturday was our annual pool party pilgrimage to Jeff and Kim’s house. This month my wife Jeanne and I will have known Jeff for 25 years (since college) and Kim for maybe five years less. It was our job to bring the cheese and whatever else old college friends can offer. Mostly relaxing, casual and clever chat, the easy conversation you slip into with those who knew you before you had to pretend to be adults, when ill-conceived escapades ended up on as fond but secret stories, not broadcast on Facebook to future employers and the world.
It was my fault because Kim asked me how I was doing, and I’d tried to generously volley, saying, “Fine, but how are you? – I’m not the one pushing the rock up the hill.” After a short update on her blog, out came the guest blog question.
Guest blog? Was she honestly asking me to do something just 15 minutes after getting here? Wasn’t it enough that I’d spent the early afternoon the last place I wanted to be, stuck on the Garden State Parking Lot, crawling through traffic all the way from New York. Our two girls 11 and 14, were keen on their pool, but surely there has to be a pool that doesn’t require a 5 hour round trip. But it was a trip I made happily, if grumpily as we sat in traffic, a slog relieved only by a high speed motorcycle/state trooper chase up the breakdown lane, the only possible place to get a speeding ticket that day. The cops are probably still writing tickets.
“No,” I said, pretty quickly, “I don’t know anything about autism and I’d have nothing to say.” Subject changed, we spent 5 or 6 hours of enjoying beers, burgers and good company, then headed back to New York. Around 2 am I woke up, thinking about the guest blog thing. Ideas? None. What do I know about this?
I’d managed to write something before which was helpful, but that was totally inadvertant: our Christmas-time family “newsletter” 5 years ago. I wrote it because…. I hate family newsletters. Which is why mine explained that I’d had such a bad year, having read in their holiday missives how wonderful everyone else’s lives were, about their great jobs, vacations and most of all their perfect kids. The sense of inadequacy, I explained, was driving me to drink, what with my wife who was tired of me, our un-exceptional children, disappointing vacation and generally dull life. After 2 pages of moaning, I concluded by saying that, “while things could always be better, we remain hopeful and most of all thankful, especially for our kind, forgiving, self-actualized friends. From your newsletters we only hope to glean the missing clues to a happier New Year.”
We got three reactions to this little stunt. Some thought it was funny. One couple, close friends, immediately called, offering to help put together an intervention. Seriously. We’re here for you, they said. Which they are, bless them. (Just for the record, they’re earnest newsletter writers. Most earnest.) And then there was Jeff and Kim.
They dubbed it one of the highlights of their year. Almost at the end of their rope from dealing with Justin’s diagnosis, they explained that, that year at least, the circumstances made it too painful to read the otherwise welcome news about everyone else’s children. Hearing about someone’s comic disappointment on the other hand – the first we’d laughed in ages, they said. And so it was that I got to be useful again to them that night, just by listening for an hour or so over drinks in a New York City bar on a rare early day away from autism, as they described their weariness and isolation from having to tend to Justin constantly, the endless bureaucratic struggles for his care, and how I’d accidentally been helpful in print.
But what to say now? About the most I’d had to offer Jeff and Kim directly on topic was early on, putting them in touch with a former high school girlfriend and her husband whose oldest son was autistic and who were very involved in research fundraising. If nothing else, it was someone farther along in dealing with the situation who might offer some words of knowing advice.
Maybe someone could offer a few thoughts about how to interact positively and help out a friend or acquaintance with an autistic child. After thinking a moment, I had to assume this has been done before – my wife says there are no more original thoughts (I’m scared to ask her whether her pronouncement was one since she’s always the exception to her rules). Rather than research the topic to prove her right yet again, and because different things work for different people, I decided to list a few of my own thoughts, such as they are, if only to remind myself of my own goals.
After mulling the categories, it seemed that there was a decent overall rule of thumb, which is not a bad place to start: do those things you would to help someone with any other long-term medical condition.
Don’t withdraw. No matter how casual your relationship, no one wants to think that their child’s condition has made people pull away. Some people don’t deal with illnesses and serious issues well, but you can be sensitive to how you go about things if that’s the case.
Make yourself available. Don’t be afraid to offer. You don’t need to be there all the time for someone in order to be helpful. It’s a comfort to hear someone say that you’re there for them whenever they need you, even if they never take you up on it. Let them decide when to ask. You can discuss when they do whether you’re comfortable with the request.
Don’t contact them every time you see an article or a news story. (There was a featured story in the New York Times just today). Chances are, they’re already reading everything they can about the subject and thinking, if only I researched more… And everyone else is pointing out the latest article. Read a few yourself and you might notice that most articles are general and don’t have anything new or specific to offer. (Probably not this one either for that matter).
Every child is different. Remember that just because someone else you know has a child who’s made great progress doesn’t mean it will translate or apply. Chances are, they’ve researched the therapy in question and considered it. Someone else’s success is great for them, but that’s a painful reminder.
Give them a break. Autism is a full time job for parents. Marriage, work and parenting are hard enough on most couples even without the challenge of trying to help a child to live with, if not overcome, autism. Whatever you can think of that will help ease the load is probably a good idea. Visit, call, send joke spam, send a random gift basket or something for no real reason. Some part of their day has to be their own.
Educate your own children. If you’re going to visit someone with autistic children, explain to your own children what to expect. Children with disabilities are often mainstreamed today, so your children are probably in a better position to understand this than when I was kid.
Don’t brag or complain. Parents of children with autism don’t expect everyone else to stop having their lives which are autism free. By the same token, they also don’t want to hear someone brag about their perfect children, the overcompetitive striving we often default to as we begin plotting almost from birth what college our child will attend. Complaining about how hard our own minor troubles are doesn’t seem to go over well either. Instead, show equal interest, perhaps let them lead the conversation to topics that are comfortable.
Pray for them. I wasn’t much for praying when I was younger but that’s changed over time. Thinking about things beyond myself helps keep the big and little things in perspective, and the details become less stressful. To me, praying is like the moon. It’s far away, but it affects the tides, the spin and even the shape of the earth. If you can, tell them they’re in your prayers. Even if you’re not religious, tell them they’re in your thoughts. How many of us watch TV and cheer on our team as if it has some invisible effect on the game? If you can believe in that, why not cheer on a friend. It’s helps to know someone is pulling for you, like your own fans, your very own moon.
Write a guest blog if you’re asked. A day off from blogging might be a nice present. This one’s for you, Kim. Enjoy. You’re all in my thoughts and prayers.
August 25, 2010
Memories
Some people employ their green thumbs in their gardens, immersed in a hobby for which I have apparently zero aptitude if one counts the corpses of half-neglected plants strewn around my home. Some people Facebook (when did that become a verb?), because evidently it has become imperative in our society to share every thought we have the second we have it (and yes, I’m on it). Some play golf, an activity I used to excel at as long as there was a windmill involved, and the opportunity for a free game and the potential for ice cream at the conclusion of the course. Over the years I’ve finally given up on all of these endeavors, in part due to time constraints, and in part because I have collectively sucked at all of them.
So now, in order to appease my “hobby need”, I scrapbook. I know, it’s such a sexy pastime. My husband is a fortunate man.
I’ve received some abuse for the scrapbooking over the years, mostly from people who’ve indicated I should at least have had my AARP card prior to starting down the road of laying down permanent memories. I’ve taken the ribbing with grace, and continued to annoy the hell out of my husband three or four times a year when I desecrate the dining room table with my papers, photos, sticky pads, and stamp dies (admit it, you’re impressed with my knowledge of the lingo). If I had to give myself a grade I’d say I’ve earned a B- overall (I tend to replicate the same layout repeatedly, as much due to laziness as a lack of creativity), but an A for effort. I enjoy this activity once I get into it, although every evening there is a bit of an internal struggle for me to forego the seductive appeal of my flatscreen and multiple opportunities to watch old Law and Order episodes.
Despite the allure of television I will continue to make permanent memories, in part because when I look at my photo albums now I often find myself peeling back the translucent covering in an attempt to remember why I felt it imperative I snap this moment in the first place. The nice thing about scrapbooking is you’re supposed to accompany your photo with a caption indicating why it was worth immortalizing at all, a verbal snapshot that in itself helps jog the medulla oblongata. My memory was on shaky ground with the first child, and sadly was permanently incapacitated after the birth of the second. This hobby affords me the opportunity to at least pretend I remembered what transpired on my oldest child’s third birthday, and that chance alone makes scrapbooking a worthwhile endeavor.
And then, of course, there’s its legacy for Justin.
There are many days when I won’t say I’m at peace with both of my children having autism, but I will say I have fully accepted the situation. We’ve achieved a certain tenuous calm, my sons and me, one in which I’d have to say while there are plenty of annoying situations that arise on a daily basis, the vast majority of the time we are happy. It is a hard-won position we hold, and one in which I am extremely proud. We’ve come through fire together, and somewhere along the way I’ve learned to integrate our daily struggles into the fabric of a family, acquired the necessary skills to shake off my forebodings for the future and attempt to live in the moment. At the very least, I try.
Most of the time I succeed, except when it comes to contemplating Justin’s lifetime care.
In Joan Dideon’s lyrical memoir “The Year of Magical Thinking” she writes about the death of her mother-in-law, some of whose last words to her children included “I can’t die- who will take care of you?” Her offspring were in their sixties when these words were uttered, fully capable individuals, parents of grown children themselves. Even on her deathbed, caught between the concrete world of the living and the ethereal world of the dead, she must have known they’d ultimately thrive without her presence, yet couldn’t quite conceive that this was possible without her.
I empathize.
It is so painful to me to envision my son, who will most certainly need constant supervision until the day his gracious heart stops beating, as an entity in this world alone, perhaps even for as long as I have already graced this earth. It is potentially the one concept I cannot reconcile with my need for acceptance, my desire to incorporate all aspects of his disability into the framework of our family’s life so that we can move on, enjoy one another as much as possible. On certain days I’ve envisioned a sort of autistic “Chavurah” as his fate. It is a lovely concept in the Jewish religion where a cohort, a family of sorts, is created, one in which they celebrate life’s triumphs together, and support one another through life’s inevitable sorrows. In my particular construct myself and other women of my generation comfort and check on the generation of children born before ours, the now motherless, the disenfranchised, the ones whose families are no longer there to protect them. In my fantasy world this turns into a “pay-it-forward” type of situation, in which the generation of mothers after me will later care for my own son in his group home when I am no longer able to play that role.
I can dream.
Ultimately I am a reality-based girl, and I am aware that creating a collective of women who will look after my son following my death is simply a wee bit unrealistic. Besides, bossy as I am, even I cannot wield that much influence beyond the grave.
So, I scrapbook.
I permit myself to imagine his imminent lodgings at times, mostly in an attempt to familiarize myself with the future so that it won’t seem quite so foreign when it ultimately arrives. In my imagination his room is strewn with photos, upright on mantles, bureaus, and desk. Smiling portraits adorn the walls, some of the celebrations long since concluded, some of simple, random moments which often end up being of equal importance. On his bookshelf, in a place of prominence, the diaries I have kept of his development and achievements will reside, nestled firmly next to the baby book in which I have yet to pen his first word. In my mind’s eye, he will be surrounded by proof of affection, a permanent record of commitment, of pride, of love.
The scrapbooks, however, will be what I hope will seal the deal. He enjoys perusing their contents now, and I often wonder how much he recalls of the recorded festivities on their colorful backgrounds, accompanied by stickers and buttons designed to enhance the page’s theme. I hope they will be a comfort to him down the road, but what I hope for most is that they will be viewed by individuals other than my son, that his caretakers will take the time to mark the passage of the middle-aged man before them, to acknowledge that he was once a teen-ager, a child, an infant. That he had, to some extent, a normal childhood. That he was adored by his family. That he was loved. That he is, indeed, a whole person.
And so, I scrapbook.
August 24, 2010
Gratitude Attitude
This week, I have to say, the winner of my “gratitude attitude” appreciation award has been my son, Justin. Over the past several months he has successfully navigated his way through two completely new camps, a new school placement, swimming lessons in a foreign locale, and has been adored by all. In a landmark move, he’s even consistently allowed me to trade his sneakers for Tivas when heading to the beach. This true first has precluded me from the time-honored Jersey shore tradition of scraping every speck of sand off of not-so-tiny feet before replacing sneakers for the long trek to the car (I am almost as grateful for the latter as I am for the acclimation to the new camps and schools.) I am, as always, exceedingly proud of him.
Thank you Justin!
August 23, 2010
Happy Anniversary to Me
I know, I know, it’s only been six months since I started blogging, while some people have been sending their thoughts into cyberspace for years. I believe in celebrations however, often find myself searching for the smallest excuse to commemorate some slight achievement, or looking for a reason to mark an occurrence that would otherwise have gone unnoticed. Perhaps I’ve never really moved on from those days in high school where acknowledging each month of your “relationship du jour” was the norm, that non-Hallmark holiday where your current boyfriend honors the commitment of your love even if it has not lasted much longer than most warranties.
Happy Monthaversary to me.
Six months ago I was completely adverse to sharing my thoughts in this type of forum, had rarely examined anyone else’s blog, still thought Facebook was the stairway to Satan. Part of my reluctance was due to my technological inadequacies, and part was due to discovering that keeping two special needs children alive and writing a manuscript was a wee bit time-consuming. I admit, in part, my hesitation was also due to a belief that writing a memoir was “LIT-AH-RA-TURE”, and therefore not the slightest bit narcissistic, but writing about my daily life was.
My, how times have changed.
Frankly, I’m addicted now, have put dark chocolate and wine coolers on notice that my affections are fickle, and have discovered that scribing my thoughts on life with two children on the autism spectrum is a habit I can no longer control. It’s been immensely cathartic for me in a way that writing the manuscript was not, for I found when writing the book I felt compelled to constantly keep my audience in mind. Here, in the blogosphere, I let it all hang out (in the literary sense), and pretty much address whatever is on my brain for the tiny amount of time I’ve been able to carve out at my computer. Thus blogging, dear readers, has turned out to be far more fun.
I’m still not certain what I’ll be when I “grow up”, whether the blogging will indeed one day win me and my manuscript a coveted contract with a NY agent. I’m not sure how much longer I’ll be able to continue to write my little missives, as it looks like I might actually have a child requiring future college tuition payments, and retiring before I’m eighty-five is also a goal. It might also be a nice idea for me to eventually devote my time to an endeavor that is financially lucrative, so my husband isn’t the sole contributor to the family coffers.
It’s just a thought.
But in the meantime I’ll keep plugging away on WordPress, grateful both that I have this outlet, and that my husband not only found the time to help me create my little niche, but didn’t divorce me during the process. I would also be remiss if I didn’t mention some wonderful fellow bloggers who have welcomed me into the fold, made the entire experience far less frightening, and have made me permanently overcome my need to actually meet someone before I could determine whether or not I liked them. These women share their stories in eloquent (and often hysterical) fashion at:
http://adiaryofamom.wordpress.com/
http://www.roostercalls.blogspot.com/
http://sonidoinquieto.wordpress.com/
http://nowelcometoautismpacketwhatnow.blogspot.com/
Thank you, thank you, thank you my readers, for sticking with me as I learned this process, and for taking the time to comment when I am certain you have just a few other things lurking on your personal “to-do” lists. I appreciate the effort, and plan on remaining here with my now second-tier chocolate addictions in close proximity (and who am I kidding, the wine coolers often lurk here too) until my spouse once again requires a paycheck.
Simply, once again, thank you.
August 20, 2010
Family Ties
We had family stay with us this past weekend, my husband’s sister and her husband, and their lovely daughter making her transition to womanhood. After eighteen years with my husband, first as boyfriend, then fiancé, then spouse, I feel confident claiming these relatives, and Jeff’s brother’s family, as my own family now. What’s even more fun is that I actually like all of them.
This recent trip was particularly special because it was the first time they had stayed here since Zachary commenced his path to relinquishing the quiet fog he seemed to reside under, his opaque shroud which was eventually replaced with a desire both to communicate and to interact with those around him. A year ago he wasn’t really interested in having guests, although he perked up a bit when they came, and eventually succumbed to the experience. This summer however, his cousin is all he can talk about the week prior to their visit, with special mention of his uncle, who is a veritable kid magnet. This is the individual who first convinced Zach he could indeed survive being submerged under water, and that conviction has stuck with him ever since. I remain eternally grateful.
There is always a little tug at my heart when we have company now, for while I’m ecstatic that Zach is so interactive with basically anyone who crosses his path, I still yearn for the same for Justin. He has made progress over the years, and definitely acknowledges the intrusion into his world with the briefest of smiles, a glimmer of recognition, and if that person is fortunate, a hug or the touch of his hand on an outstretched cheek. He is particularly enamored of his three cousins, all considerably older than him, but all until recently still residing within the parameters of childhood. I know in my heart he comprehends in some way that these people belong to him, that they love him, that he is theirs. It is a great solace to me that a few times a year Justin’s world expands beyond the confines of his father, mother, and little brother.
This visit, I even get a bonus gift. Most of the time the kids’ different schedules preclude us all being together other than meals, plus we generally have to contend with Justin’s all-consuming desire to remain in the house. This past weekend I was awarded a prize- an entire hour in which my immediate family and my family by marriage frolicked together in our pool, with not only Zachary thrilled with the attention, but Justin somewhat engaged with everyone, and at the very least consenting to immerse himself in the calm waters of our backyard haven. He lasted outside twice as long as he usually does, enough time for me to play a bit with him, to watch Zachary douse his uncle at least thirty times, and to consume an entire wine cooler while it was still cold. For me, this constitutes a stellar day.
And I will say this- if I could release this family from the bonds of autism, erase the suffering I’ve witnessed my two children experience, I would sell my soul, make my bargains with the devil, do whatever it took to eradicate this disorder from our lives, because it has caused my sons pain. It has caused my husband pain. And there is no doubt, on a variety of levels, I have suffered as well.
But I also know in my heart I would never appreciate this hour as I now do, would not even have it register on my list of things to be thankful for, would probably instead spend the entire time attempting to remember where all the necessary staples reside in my kitchen for the meal I’d eventually be preparing that night. Although this gratitude does not in any way mitigate the circumstances that spawned it, I recognize I am finally in a place where I can excavate something positive from this experience, this journey that has scarred my heart and soul.
And for that, in this moment, I am grateful.
August 19, 2010
Guest Blogger Thursday
Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist
Today’s guest blogger is www.roostercalls.blogspot.com/, welcome!
Recently I took Peaches to the park to play with her best buddy and his siblings while Rooster was off at day camp. “How is Rooster?” asked the sweet dad on the play date. “If you don’t mind me asking, what is the prognosis for Rooster?”
No, I don’t mind being asked — I appreciate concern about Roo — but I don’t know what to say, exactly, either.
We have many people who micro-”ist” our boy. By that I mean that we have people who deal with his this issue or his that therapy… they touch his trunk, his tusks… but I don’t know how many really deal with the whole elephant in the room of where our journey might take us. Then again, did my parents know when I was six what my future held? Do any parents have a prognosis for the future of their kids? You have kids, then you hold on for dear life… you wait and see where the journey takes you, I guess. Sometimes I wish I had a crystal ball…
Some of the ists in our life have tried to prepare us for the possibility of thinking about group homes one day, while others talk like they assume Roo is going to find some special Bill Gates or Steven Spielberg talent and take over some sliver of the world. And then there are a lot people who fall somewhere in between…
Lately, Roo has taken to asking me, “after first grade, THEN can I go to college?” I overthought this perseveration for quite a while before I smacked my forehead with my palm and realized that when my boy gets stuck on something, a movie or a book can almost always be blamed. You probably got it faster than I did, since I confessed to you last post that I am so not a movie girl, but Toy Story 3 is the origin for the college obsession. (I love when my boy asks, “When I go to college, can I come home and watch TV? Soon can I go to college?”)
Well, we might not be ready for college come fall, but there are some big developments and a graduation of sorts underway. First, our boy is VERY GRADUALLY, and haltingly, and with lots and lots of support, reading his short little Open Court first grade books. Let’s hear it for his AMAZING tutor, Ms. S. Wow, it’s hard, and it’s wonderful. I weep a lot. Roo gets exhausted a lot. We plod forward. Twice a week, he sweats and struggles and earns his giant sticker for tapping and blending, for sounding out, “See Tim spin.” Second, the talks have begun to plan a graduation from ABA in-home services. Wheeeewwww. No, his behavior isn’t perfect, but we might have squeezed as much juice as we can from this lemon, so to speak.By Thanksgiving, we should have 10 hours a week freed up, after almost two years of “helpers” and programs. Next up, social skills classes.
Math still mystifies our boy in a way that is beyond troubling. Numbers seem to have no significance to him. His four year old sister often tries to whisper the answer to the math questions we offer him or otherwise throw him a hint as subtly as, oh, a great big red hickey. Today I gave him a little word problem to ask him to add two plus two, and he goes, “Three! Six? Umm, maybe 10? Can I have a snack? WHAT?!” Meanwhile Peaches is all but thrusting her four fingers in his eyeballs.
At camp, the Roo has a shadow, and she tells us he has been learning to play pickle and kick ball, do hopscotch, make Fortune Tellers (aka cootie catchers), and step dance, among other things. A few days I have needed to pick him up later than she can stay, and he has managed the last half hour of the day okay without her there, just hanging out with other kids his age.
Last weekend, we discovered a place in the area that does FREE therapeutic horseback riding, and while Roo isn’t exactly The Boy Who Loved Horses, he did pretty fantastic riding on Mark, the sweet white horse, with the help of three expert volunteers. After, we got to swim in the pool at the ranch, and while neither of my kids can swim yet, it’s one area that our little guy is making progress faster than his sister. He still wears his floaties, but he’s holding his breath and going under, blowing bubbles, practicing strokes and kicks a bit… he’s not afraid of the deep water, and he’s making progress.
I have no idea what my son’s long-term anything is, and I’m not going to even try to predict tomorrow. The words tomorrow and yesterday still confound him, and he has a poor sense of time. But I am very proud of him, and I love watching him grow, change. I think about his “developmental disorder,” but more I think about how far he has come. A year ago, who would have predicted my boy would be sitting straight and tall as instructed as he takes a horseback ride, reading to me proudly about spinning Tim, wanting to master hopscotch, holding his breath underwater?
The long term prognosis for the rooster is that his mama is going to love him
August 18, 2010
Sunny Day
“Play Sesame Street with me!” Zachary entreated Justin’s receding back, as my oldest child decided to take another lap around our house with his DVD player in hand. My youngest did not seem even slightly dejected by Justin’s refusal, and instead trotted eagerly back to his playhouse, where Elmo waited patiently on the potty and Ernie was hanging precariously off his bed, moments away from a second story fall and a guaranteed hip replacement. To be perfectly honest, it’s dinner time, and in most instances I would have let this moment pass as my hands are immersed in chicken guts and both kids are actually entertaining themselves, but this time I just can’t let the opportunity slide. Besides, I’ve surpassed my daily allotment of dark chocolate this afternoon, and the caffeine high has given me an extra energy boost. I wash my hands carefully to dispense with any threat of salmonella, and march determinedly after Justin. Today, by all that’s holy, my kids are going to play house together for seventeen consecutive seconds if it kills me, AND I’m going to catalogue the moment on my digital camera. I dare anyone to try and stop me.
Justin regards me slightly quizzically as I lead him back to the playroom, but he’s used to me forcing him to do things outside of his comfort zone, so he’s really not all that surprised by my actions. I slip the DVD player out of his hands and tell him I’m going to charge it, then settle him next to his brother on the floor, introduce charger and player to one another, and dash for the camera. Most of the time Justin would already have abandoned the endeavor in order to secure his back-up player, but for once he’s remained stationary, and Zachary is beaming. I look down at the peaceful tableau from my vantage point on high, watch Justin disregard Zach’s gaze as he informs his older sibling as to the main players’ names, but I can tell that the lack of eye contact is irrelevant to Zach. Justin is casually twirling Bert in an arc that surely would render any human utterly seasick, but he remains plastered to the floor, hip and shoulder brushing up against my last child’s torso, content.
Zach has dubbed Bert with a new name, “Bert Mommy”, and I watch as his skinny friend bosses Elmo around and tells him to hurry up on the potty. I relieve myself of the necessity of examining how mean Bert Mommy sounds, and instead depress the shutter on my camera, and record their interaction before Zach’s inevitable clamor to “SEE IT!” I notice Justin starting to sidle away from the scene as I lower the instrument, but I am just happy they’ve had this moment together, that they are beginning to have them more frequently, and that they sometimes occur without my maniacal prompting. I am amazed, every single time, at how immensely gratifying it is to simply watch my sons play together, how grateful I am that these moments exist at all. I am aware not all families in our situation are so fortunate.
And as I return to my kitchen and my waiting chicken innards, I first stop for one last hit of chocolate, because if this doesn’t warrant celebration and the support of my cocoa addiction, I don’t know what does.
August 16, 2010
Jungleland
“We’re going to the jungle, Daddy?” asks my youngest son, who stopped dead in his tracks when my husband uttered the words “jungle” and “safari” in his presence. “Yes sweetie, we’re going to Great Adventure, and there’s a place there where wild animals live. We can see them from our car.”
Lions and tigers and bears, oh my.
It’s early on this July Saturday morning, or at least early for us, and for once our calendar is devoid of plans, no team meeting to discuss Justin’s progress, no therapy (for any of us), no autism movie, no hair appointment for mommy. It’s just our family and a beautiful blank slate until Justin’s horseback riding lesson late in the afternoon, and since the amusement park is mere minutes from the barn it makes perfect sense for us to attempt both activities. We’ve also decided to add on the safari as an extra degree of difficulty, an experience I am certain Zachary will adore, and fairly certain Justin will loathe. Seeing as how most residents of the jungle life don’t light up or spin, I am confident my oldest child will be counting the minutes until we zip through jungleland and get to the good stuff, the rides. I’m basing this assumption partially on his reaction to several zoos we’ve taken him to in the past, where he wore a look on his face that said “I’m doing this for you, you people had better appreciate it”. Not even monkeys cavorting with their babies or elephants defecating right in front of us could do it for him. Justin is a tough sell.
After the gooping, the bathroom breaks, and of course what I’ve dubbed “the odious gathering of the crap”, the four of us manage to get on the road and make it to our destination in record time. We weave our way through the entrance to the park, bypassing the water rides region as we usually do, and quickly make the sharp left that signifies we are now entering the wild plains. I look in the rearview mirror and see my oldest son on high alert, sitting up in his seat, looking out the window a bit bewildered. Since we’ve arrived at the earliest time possible we only have a brief wait to gain entrance, and after declining the extravagant offer of an audio tour we glide through the large silver gates into “Africa”.
The caterwauling begins. I am curious to see who in this car will make it out alive.
Within seconds it is apparent to us (and perhaps anyone within a five-mile radius) that Justin is quite distressed by our detour. As we slowly wend our way through wildebeests, emus, and peacocks, the latter of whom frankly seem too cheeky for their own good, I am struck by the dichotomy of experiences being enacted in the backseat of my car. Zachary is enthralled, pointing out animals with gusto, repeating “what’s THAT?” with great enthusiasm as his father frantically searches through the brochure to identify exactly which animal he’s regarding. On the other hand we have Justin, whose percussions of kicks on the back of my seat will be the deciding factor in whether or not I seek chiropractic aide, and whose staccato beat is being accompanied by a steady stream of angry vowel sounds I am certain cannot be matched by even the fiercest member of this animal haven. Jeff turns to look at me as I ask “how long does this take again?”, and we both placate ourselves with the promise that perhaps the “serious” animals will do it for Justin, those elephants, tigers and lions that at least seem to hold his attention in videos. We acknowledge to each other if the big guns don’t do it, we’ll be forced to listen to his tyrannical tympani for a good forty-five minutes longer. I am deeply regretting the gate-keepers didn’t offer me a margarita instead of the audio tour. Hell, you can only drive ten miles per hour here anyway.
Zachary is kind enough to inform us that Justin is crying, and as I gingerly regard my son once again in my rearview mirror I note indeed that he has turned on the waterworks. His face is beet red, he’s sweating, and with each turn of the car that doesn’t end up in the mecca of an exit he ramps up the vocals a bit, until I’m certain that some mammal in the area is going to hear it as a mating call. I look at my husband once again, expecting both of us to grimace at our faux pas, and me to begin my usual mea culpa at not being able to divine in advance exactly how tortuous an experience this would be for all of us, and subsequently chase this realization with a good self-chiding for my son’s suffering. Jeff and I make eye contact again. Instead of expressing remorse, we both burst out laughing.
I know. The headline reads “INSENSITIVE PARENTS MOCK AUTISTIC SON”. Really, I should be ashamed of myself.
Except, this time, I’m not.
I’m not upset with my choice, or castigating myself for laughing, or even in a hurry to finish this damn safari and get on with our day. For once, I’m not internally traumatized by Justin’s unhappiness, searching frantically in my mind for a way to appease him. In fact, I have no intention of speeding up this trip, or offering him a toy, or bribing him with food. He’s going to have to sit there for thirty-seven consecutive minutes more while his fairly oblivious brother enjoys this experience, and I’m not going to feel badly about it for one reason.
This is not autism. It’s just Justin not getting his way, and being bratty about it. Today, he’s just being a little boy, and he’s going to have to suck it up.
How do I know this you might ask? Well, first off I’m a Pisces, and that intuitive instinct is a well-developed sixth sense in me. Yes, I’m a bit prescient, am capable of discerning the genders of unborn children (except my own) with unwavering conviction, was able to predict with stunning accuracy that Jon and Kate Plus Eight might not end well, and that going “lighter” on the content of the SATC sequel might not be such a good idea after all. Sure, you could write off all of these predictions as mere coincidences, but I’ll tell you this: I do know my son. I know when he’s experiencing sensory overload, I know when he’s scared, I know when his OCD is in overdrive and he’s beside himself, and I know when he’s just plain mad. Today, he’s just mad. He understands perfectly that he’ll get to freak out his mama on Skull Mountain, that he’ll be served his exorbitantly priced pretzel, that the unmitigated torture of watching the residents of Noah’s ark will indeed end. He can’t say it in words, so he’s expressing his disdain the only way he knows how, with sharp kicks to my kidneys and a torrent of tears.
Jeff, being a Capricorn and therefore not psychic, asks me if I’m sure Justin understands he’ll achieve his preferred destination at the end of the road, and I reply in the affirmative. I tell him we’ll know for certain when we exit the safari and drive in the direction of the park entrance, that if Justin is surprised he will jump up and down in his harness with elation, display a grin that will envelop his entire face, and vocalize his relief that indeed his stupid parents have figured out where he wanted to go all along. I assure him this is just one more thing we have to endure, that at least Zach is excited and happy, that it was worth it to come here for him.
After what seems an absolute ETERNITY we leave behind gazelles, hippos, and hyperactive monkeys and begin our exit from the bowels of the jungle. At a 15 MPH minimum I am capable of simultaneously steering and regarding Justin through my rearview mirror, and as we make our way to what could potentially be construed as the exit to 195 or the entrance to roller coaster heaven, I listen for sounds, syllables that will indicate Justin’s current mood.
There is complete and utter silence.
I shift slightly to look back over my shoulder for a better angle, and I see my son, tears drying on his face, still in body, serene in countenance, with a smile of divine satisfaction playing on his lips. In his mind he has won, his protests have allowed him the escape from “Satan Safari”, and delivered him to the much-preferred grounds of Wiggles Worlds and carbohydrates. I know, to the depths of my soul, that he understood we’d end up here, that he knew this detour was not permanent. I also know that this delayed gratification, while conflicting with the treatises of the Geneva Convention for his parents, was good for him. This kid has a great life, filled with trips to the beach, boardwalks, his own pool, visits from relatives, and equestrian lessons for God’s sake. It’s okay if he’s unhappy sometimes. It’s okay if he waits. It’s okay if I require a Valium prescription in the future if we’re going to do this more often.
And as we shuffle our way through the crowded parking lot looking for a spot near a sign with a Looney Tunes character I’ll actually remember, I realize, once again, in our own fashion, we’re having a “typical” day, an outing that most families with “normal” children experience, and that we survived it. We’re okay, and Justin will be okay too.
Now I just have to pray they haven’t run out of pretzels.
