May 11, 2013
Walk-a-thon for Someone Special Needs You
Zach distracts me for a moment, clamoring for me to appreciate his Easter masterpiece. As I turn to give his creation its proper due I see a basket of eggs teeter precariously from its perch near Justin’s elbow, and I lunge to save them.
The fact that they’re not real seems to have escapted my primal instincts for the moment, and I have to laugh at myself.
I secure the errant basket in the middle of the table this time, and my eldest gives me a look as if to say “What’s your problem, Mom?”, a query to which I could give a variety of responses. Instead, I make a concerted effort to lower my heartrate while making sure to keep Justin’s curious hands away from the glue gun that’s apparently become very enticing to him.
It’s just another Friday night at Someone Special Needs You.
SSNY was founded by Vince Scanelli, a parent of an adult child with autism who wanted to provide his son with both a social outlet, and an activity-based evening that didn’t center solely on his family. One Friday night a month (except for January and the summer months) children and adults with a variety of disabilities gather behind the Colts Neck Reformed Church to partake in crafts and events, while simultaneously being assisted by neurotypical teenagers from the Colts Neck school district.
It’s a lovely program, an opportunity for individuals with special needs both to get out and to have a “friend” for an evening, and an equally important opportunity for a number of teen-agers to have a glimpse into the world of difference and disability.
A win-win for all.
I began bringing Justin, then later Zach, to SSNY six years ago, when Justin was only three, and Zach had not yet graced us with his presence. I still remember seeing the flyer in the depths of his backpack and being elated to discover what I felt would be a fun opportunity for my boy, one for whom many traditional childhood activities are decidedly not fun.
I knew he liked crafts, and loved activities like trick-or-treating, bouncy houses, and Easter egg hunts, so I figured this would be a great event for him. With a few rare exceptions (most notably the time my aunt and I had to carry him out to the car after a tantrum of such magnificent proportions I knew he’d set an all-time record), he’s enjoyed every minute there these last six years, as has his mom.
One of the best parts is, it’s also free.
SSNY is always looking for new families to participate, and I’m writing today in part to encourage any of you with special needs children to give it a try, and in part because the organization is holding its very first walk on June 1st in Spring Lake.
The boardwalk will not be ready so we will be walking around the Spring Lake lake. The walk starts at 9:00 AM and ends at noon. Parking is available in the train station at Warren and Railroad Avenues, and the walk start point is at 5th Avenue and Warren (look for the blue tent).
In addition to offering a once a month alternative to a typical Friday night at home, Vince is also attempting to create a group home in central Jersey at Overbrook Farms in Colts Neck. The home is the inspiration for the walk.Vince will require a significant amount of funding to bring the establishment to life.
If he’s successful the group home will consist of ten beds for as many adults with disabilities, as well as the chance for said adults to participate in a working farm.
In many instances adults with disabilities have been marginalized in the workplace, and this farm would grant the opportunity for ten people to contribute to, and ultimately hopefully work with, members of the Colts Neck community. For many parents of children with special needs (this one included), a place to reside and a meaningful workplace would be dreams come true.
I know we are all besieged by requests to donate these days (I swear, I’m hit up at least a half dozen times a week between autism and the Girl Scouts), and I know money’s tight for us all. So, if you’d just prefer to come out and cheer on SSNY on June 1st, or give the evening activity a try, we’d love to see you.
I’ll leave you the website below, and if you care to join us in any fashion, we’d love your support. Thank you!
http://www.ssny.org/ (forms for the walk are available here)
May 4, 2013
Teacher Appreciation Week
Today’s post is in honor of Teacher Appreciation week, and is dedicated to the teachers, therapists, administrators, and support staff who work with all of our children.
Dear Educators,
It’s been almost nine years since my eldest son was diagnosed with autism, and it would be the understatement of the year to say it hasn’t always been easy. My family’s journey with autism has comprised two states, dozens of doctors, therapists, teachers, and Early Intervention practitioners, and by this point I feel as if we’ve seen it all.
For us, however, there has been one shining thread of competence woven throughout all of our trials, and I feel compelled to speak of it today.
In essence, all hail to the teachers.
It hasn’t all been smooth sailing of course. There were a few IEP meetings along the way where I cried (one was at the thought of my eldest son moving on to a new teacher in the coming school year, perhaps that one shouldn’t count). Frustrastion regarding my boy’s academics and behaviors has intruded on occasion, and a few times I felt I wasn’t truly being heard.
For the most part however, my family and the bevy of educators assigned to both our boys have been able to play nice with each other, and for this, among other things, I am eternally grateful.
I’ve felt that the dedicated men and women who’ve worked with my sons have respected them, pushed them when appropriate, and equally importantly, have liked them (and trust me, at times both of their behaviors have not been particularly likeable).
Truly, none of them are paid enough.
So today, I’d simply like to say thank-you. Thank-you to the speech therapist who stayed up all night to reinstall the programs my oldest son deleted from his iPad, just because he thought erasing them all would be fun.
Thank-you to the child study teams who tweaked, manipulated, and created the perfect IEPs for seven years for my kids, then made certain they were enacted. Thank you to the administrators who gave us time during that long, awful period when Justin resumed his aggressive state last year, waiting months while we figured out how to quell the terrible tide of his anger without having to remove him from his school.
Thank-you to the aides, the life-blood of any classroom (I know, because I’ve been one), who’ve not only tolerated my sons’ non-compliance at times, but have regarded it as a worthy challenge.
And last, but certainly not least, thank-you to the special education and regular education teachers in three different districts (it takes more than one village sometimes) who have challenged my children, believed in them, loved them, and put up with me to boot.
The latter statement should earn them all the medal AND the monument.
You have not only made a tremendous difference in the lives of my sons- you, through your kindness, your commitment, and most importantly perhaps, your competence, have given my family a life.
For once, all I have left to say is thank-you.
April 28, 2013
The Nod
It’s Thursday morning, just a regular day before school starts, and I am trying for what seems the hundredth time this week to figure out something my eldest child will possibly consume for breakfast. Over the course of the past seven days I’ve hawked three different cereals, pancakes, waffles, even French toast, all to no avail.
I hate sending him to school on an empty stomach, but I seem to have run out of options as I whip eggs and milk into the frothy concoction which will soon fill up my stomach. I’ve offered Justin eggs before, which he has regarded with all the enthusiasm of a patient approaching an overdue root canal. Today, just for the heck of it, I turn to look at my tall son who is immersed in his DVD player and ask “Justin, do you want eggs?”, fully expecting no response whatsoever.
And in mid egg-flip, my son looks me in the eyes and nods an emphatic yes.
I fling the spatula down on the unsuspecting stove, and run over to my boy, afraid I’ve misinterpreted the first time Justin has answered a “yes or no” question in our home. I turn off the DVD player and angle him toward me, and pepper him with queries I’m certain he’ll soon find tiresome.
“Is your name Justin?” (nod yes). “Is your name Zachary?” (nod no). “Do you think your mom’s gone crazy?” (okay, I didn’t really ask that one, but contemplated it for a moment there). Truth is, I asked about a half dozen more close-ended questions, and he responded appropriately every time. I did what I lovingly call the “happy language dance”, rescued my almost-doomed eggs, and served my son a generous portion of my take.
First a few spontaneous exclamations of “Mama”; then requesting me unprompted on the iPad; now this. As I drink my orange juice, I admit, I’m a bit verklempt at these new developments.
I recently read a study informing me that while researchers previously thought that the language window swung firmly shut on most autistic children by age four, newer studies have shown that most children on the spectrum do acquire some language. In fact, the study says that almost half go on to be fluent. While we’ve kept Justin in private speech therapy and continue to work with him at home, by the time he turned nine and had shown no real progress, I began to let my dream of him having some semblance of functional speech go by the wayside.
My disappointment was somewhat mollified by the fact he is able to use his iPad quite functionally, particularly in school where he employs the device for requests and academics. In those dark, desperate days of toddlerhood when his primary method of communication was digging his fingernails into my tender flesh, I used to pray for any methodology whatsoever which would facilitate communication, be it technology or a Ouji board (again, those were desperate days).
As he’s grown and has shown great aptitude for various media my fears we’d never share even the most rudimentary standards of language disappeared, and I’ve grown quite fond of ProloquotoGo, the program through which he is able to make his needs known. Still, I admit deep in my soul I longed for a word or two, or even for him to have the capability to answer those simple yes and no queries without running to his device.
Now, he can.
There’s a great article on the Autism Speaks blog by Geri Dawson, outlining new findings about speech in autistic children, and nine other things we know about autism that we didn’t know a year ago. Among those findings, researchers are developing medicines to address the core symptoms of autism, namely communication deficits, social withdrawal, and repetitive behaviors.
Symptoms of autism are now being detected in children as young as six months of age. Prenatal folic acid, taken in the weeks before and after a woman conceives, may reduce a child’s autism risk. We are slowly making progress in deciphering autism’s many mysteries. My son, after a long, sometimes agonizing wait, is making progress too.
His mother couldn’t be more proud.
http://iteachspeech.wordpress.com/2013/04/30/an-honor/
April 19, 2013
Autism Awareness Month- A Celebration of Autism Advocates
Ed. Note: April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism.
As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals.
Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the third interview in the series.
Vincent Scanelli
Vincent Scanelli is the president of the non-profit Someone Special Needs You (SSNY), as well as the president of the Douglass Organization for Occupational and Related Educational Services, Inc. (DOORS) program at Rutgers University. He serves as Vice-President for Ride for Autism, a group home liaison for New Horizons in Autism, and as a Community Work Partner for the Monmouth County Chapter of the Arc of New Jersey.
Vince is the owner of the Colts Neck Insurance Agency, and has twenty-five years of expertise in financial planning as well as specializing in special needs and estate planning. He has two daughters, and an adult son on the autism spectrum.
Kim: How did you come to be an autism advocate?
Vince: Honestly, it was because my son was born. My family was born into autism, all we do is what we’re supposed to do for our kids. I really give credit to people who do this and don’t have kids with autism.”
Kim: How did SSNY and your future group homes come into being?
Vince: My son Angelo showed me the way. When he was little his mother and I wanted him to have peer relationships, but there was nothing out there, no groups. I got together with a couple of other parents and created SSNY, where kids with disabilities are paired with neurotypical teens for various activities.
We wanted Angelo and other kids to be able to get together and have some peer and social interaction, so we started doing monthly events. As Angelo has aged, our focus has shifted off into group homes. After this I’ll probably investigate work programs.”
Kim: How did you get started with creating group homes?
Vince: We started thinking about doing all this back when Angelo was thirteen, and he’s nineteen now. A friend of mine who is a planner knew I wanted to do a farm, and he knew a builder who was involved with affordable housing. We then connected with New Horizons in Autism, and got a grant from Marlboro, NJ to move forward with the plans.
Marlboro gave us part of their Council on Affordable Housing (COAH) funding, plus we partnered with a special needs housing trust fund (a state program). After that we would be able to purchase a house through New Horizons in Autism.
Everything was approved in July, but now the plans are stalemated, and we hope to move forward soon. We have enough money to buy a house, renovate it, and put three adults in it.
Kim: What do you envision for the property you want to turn into a farm?
Vince: We need about two million dollars to complete everything, but the property is ready, it has been donated by a large development called Overbrook Farms. It sits on twelve acres at the end of a cul-de-sac, has two barns, and it’s just beautiful.
It will have ten beds, two wings for five adults each. Since we have the barns I hope we will be able to do many different farming activities, raise alpacas, maybe have horses, and host events. Hopefully we’ll get the community involved in it as well.
My goal is for the adults to work the farm. I’d love to see the farm provide jobs for the people who live there, and for people in the community as well.
Kim: What are your dreams and plans for your son over the next five-to-ten years?
Vince: I just want him to be happy. I want him to be safe, have a good quality of life, and be the best person he can be.
April 12, 2013
Autism Awareness Month/Celebrating Autism Advocates
Ed. Note: April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism. As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals. Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the second interview in the series.
Gary Weitzen
Gary Weitzen is the Executive Director of POAC Autism Services (Parents of Autistic Children), which is the largest provider of free autism training and education in the state of New Jersey. Gary came to POAC with twenty years experience in the risk management field. In addition to his duties at POAC, for the past thirteen years he has worked for an autism program that teaches life skills to adults with autism. Gary currently serves on the New Jersey Governor’s Council for Biomedical Research. In the past he has served as New Jersey representative for Unlocking Autism, and Vice President of Princeton Autism Technology. He is frequently called upon by the media to provide his expertise on autism, and has given presentations to tens of thousands of people across New Jersey. Gary has three three children. His eldest son Christopher has autism.
Kim: How did you come to be such a strong autism advocate?
Gary: It all started with my son Chris, who is eighteen, and was diagnosed at age three-and-a-half. Before Chris, I had never known another child with autism. Just after he was diagnosed I attended an autism conference, and I looked around and saw a thousand other people sitting around me, all there for the same reason. I remember the presenters said they didn’t know anything about our kids back then. That’s when I knew I had to do something for the kids who had autism at that moment.
Kim: You are the Executive Director of POAC. Can you describe the services POAC provides to children, parents, teachers, and law enforcement officials?
Gary: POAC provides training for parents and families to help increase functional communication, decrease problem behavior, and increase socialization for their children with autism. We also provide training for teachers, paraprofessionals, and other service providers in evidence-based teaching procedures for individuals with autism and other developmental disabilities. Basically, we help teachers become even better educators for students on the autism spectrum. We also provide training to members of the general community who come in contact with individuals with on the spectrum every day. Through our Autism Shield Program we’ve trained 14,000 police and firefighters, and every year we get calls saying the raining saved the life of a child with autism.
Kim: What would your ten-year plan for POAC include?
Gary: I have some big ideas. I’d like to see us have a large facility or center, with a gym and a lecture hall for trainings, and a stage where the kids could put on plays. It would have a huge kitchen, and a computer center. We would open our doors to kids and adults with all different disabilities, that’s how we are. It would cost a few million dollars, but could make such a difference in kids’ lives.
Kim: What are your dreams for your son?
Gary: Chris has come so far. One year from now I won’t have changed much, but Chris will have made even more progress. Over the next ten years I imagine him getting a job, getting a paycheck, and paying taxes. Right now about 80% of the autism population is unemployed, and yet the vast majority of people with autism could contribute to society. We know what we need to do, and with the right funding, and the right people at the table, we could do it. Chris’s life is nothing but joy. He’s happy, and that’s all that matters.
March 23, 2013
Kick the Autism Bucket List
As I approach fifty (more rapidly every day it seems), my mind has naturally begun to ponder what I’d like to see accomplished in the world of autism during the last half(?) of my existence as I shoot for that three-digit lifespan. I have personal goals of course (learn how to use my phone, drop those last baby pounds from 2007), but quite honestly I have my own “autism wish list” as well.
Some of these stem from personal experience, some are garnered from the news, and some, to me, just seem to make perfect sense. In honor of autism awareness month, which is coming in April, I’d like to share a few points from my autism bucket list with you, and invite you to respond with yours as well. As Ms. Clinton said it takes a village (or in our community’s case, a galaxy), and I’d love to know what changes you’d like to see in the autism landscape to come.
1) First, since Virginia didn’t recognize Justin’s autism diagnosis back in the day (which forced me to be his primary therapist thirty hours a week for almost a year-and-a-half), I’d love to see legislation in Virginia which requires that adequate Early Intervention therapies be offered to children under three who are diagnosed with autism.
2) Help introduce legislation requiring every state to require teachers to take an autism certification program prior to teaching children with autism so they are familiar with this population. Duh.
3) Have a viable, appropriate employment opportunity for every differently-abled adult out there who wants one. Amen.
4) Have a viable, appropriate residential opportunity for every differently-abled adult out there who wants one. Double amen.
5) Have Tina Fey and Amy Poehler star in my autism play (okay, this is the fantasy wish, but a girl can dream).
6) See the Autism Speaks Autism Treatment Network sites become the go-to place for autism diagnosis and treatment in our country and Canada.
7) Get my books published and donate fabulous amount of money to Autism Speaks and Parents of Autistic Children (again, a girl can dream BIG).
8) Have Fairfax County Virginia schools adopt my anti-bullying program (and have the opportunity to travel down there to help implement it!).
9) See my beautiful eldest boy reside in a place he loves, and have access to riding those horses he adores.
10) Watch as Zachary is sworn in as President (or becomes a fireman, his newest passion, either way we’re good).
Thanks in advance for your contributions!
March 18, 2013
The Whole Tooth, and Nothing but the Tooth
“Mom, I lost my tooth!” my youngest son cries with wonder, a shout coupled with excitement and tinged with a bit of disgust. I run over to the kitchen table and respond “Let me see!”, and indeed, when he carefully unfurls his fingers, it appears the tiny white object nestled in his palm is one that formerly resided in his mouth.
He smiles up at me with his new toothless grin, which I know I’ll come to adore as long as it lasts, and asks me if we can put it under the pillow tonight. I respond with an emphatic yes, and ask him what he’d like the tooth fairy to bring to him. He looks me straight in the eye and answers he wants to go to China.
That’s my boy. No pedestrian quarters for him.
I tell him that although the tooth fairy is quite efficient in her prize dispensing that unfortunately travel agent is not part of her job description, and he begrudgingly knocks his request down to a Phineas and Ferb book, a desire his mother actually can fulfill. He then runs to the bathroom to see the gap where his tooth once resided, touches it gingerly with his finger to see if it hurts.
It doesn’t. Satisfied, he runs back to his seat for lunch, already asking me if we can go somewhere today as his mother simultaneously figures out how she’ll escape to Barnes and Noble before nightfall. Soon he is focused entirely on consuming his lunch, tooth loss forgotten as he regales me with his day in the fast-paced world of kindergarten.
We’ve entered the arena of lost body parts. My little boy is growing up.
There are signs of it everywhere. I see his growth in the way he’d rather struggle to put on his gloves by himself than deign to ask for help. I witness his independence when he pushes his father and me out of the room at bedtime so he can read his last story alone. I acknowledge his progress when he clamors for privacy in the bathroom, an enclave which previously required adult attendance for him at all times. My not-so-little one is intent on figuring it all out for himself, and that’s as it should be.
He’s fine with it all. It’s just his mother who has to learn to adjust.
It’s not that Justin doesn’t strive for independence too. In the past year my eldest son has acquired so many new and important milestones, from completely dressing and undressing himself without prompts, to helping clean up at dinner which requires a number of prompts (I can’t blame him, I don’t like to do it either).
He no longer shadows us constantly, prefers to be with us but not on top of us in a room unless he’s hungry, then all bets are off. Justin’s making his way in the world too, at a different pace and trajectory than the rest of us, but his way nonetheless.
It’s simply hit me that while on some level my firstborn will always need our care, his little brother will not.
I realize that relief is welling in me, threatening to make this an emotional rather than a triumphant moment, and I push it back for later contemplation so I can be here, in the now, with Zach. I can’t stop my mind however from briefly returning to those dark days when he stopped speaking, playing with toys, or interacting with those he loved in any comprehensible way.
He has come so far from that painful abyss, the one in which he resided for such a seemingly endless time. My boy will have choices, although I no longer feel his life will necessarily be more fulfilling than his brother’s.
Zach is forging his own path, one that won’t always include us. To the core of my soul, I am eternally grateful.
He finishes his lunch with zeal and asks to go upstairs and place his tooth next to his brother’s, in the small silver receptacle I received at Justin’s birth. I take it down from its resting place and note that it needs a good polishing (and also note that this probably won’t happen). Zach takes off the lid dramatically, declaring with wide-eyed wonder that his deposit is bloodier than his brother’s, a fact which apparently is quite cool. He places his treasure inside and bounds from the room, already on to his next quest, to best me in yet another light saber duel.
I bet you can guess who will win.
On tippy-toe I replace the tiny teddy bear in its sacred spot, then prepare myself for a battle which will invariably include several stung knuckles. I realize I will have to practice this slow attrition of need, of always being central to his life. It is both a glorious and difficult path.
And one I will gladly walk with him.
March 12, 2013
Talk Amongst Yourselves
Dusk is fast approaching, and as I swing into Justin’s speech therapist’s driveway I see a shadow rocking back and forth behind her glass door, its rhythm momentarily interrupted by the arc of my headlights as they cut across my son. As I turn off my engine I hear Justin register his approval at my arrival, his happy “eee” cutting across the lawn as I make my way to the front stoop. He is beaming, and I can tell he had a good session by the look on his face, and the similar expression on his therapist’s.
“How’d it go?” I ask, as Justin simultaneously shoves his big red goody bag into my arms and tries to push me out the door. “Today was pretty big” she replied, and I thwart Justin’s plan by putting down the red bag, and giving her my full attention. “While he was waiting for you at the door, he asked for you without prompting” she says with a grin, and mine matches hers, because we both know this is a momentous moment.
My boy wanted his momma, and he asked for me with words.
Justin’s been using the iPad more at home and in the community, and just a few months ago asked for me spontaneously while using the device (I was on a twice yearly shopping expedition with my sister-in-law and niece, it figures). We’ve been practicing the sentences “I want Momma”, “I want Papa”, and “I want Zach” (the last uttered sans “Z”, it actually sounds cooler that way), but to date they’ve always been prompted and repeated out of context, perhaps after teeth brushing, or while waiting for the school bus.
It’s been exciting to hear my eldest child utter a full sentence, fun to hear Zachary (the child who never stops uttering full sentences) cheer his big brother on and encourage him. To me, however, the entire process doesn’t mean much if it’s conducted without meaning, if the sounds are solicited from him when he may very well be thinking about his bed, or popcorn, or the hundredth rendition of “The Very Hungry Caterpillar” that I will likely be reading to him that night. His mother craves context, and today, I believe my son has given it to me.
Today, he waited at the threshold, was asked what he wanted, and clearly requested my presence spontaneously for the very first time. In the movies, I would have driven down the cul-de-sac immediately as the last strains of his short “a” sound drifted into the atmosphere. In real life, it took me a few more minutes to arrive, which gave him time to make a half dozen more attempts to verbally summon me, enough effort for his therapist to make certain she’d heard him correctly. To be completely honest, I’m not sure how many people would comprehend the first two-thirds of his phrase, although with satisfaction I say that his “momma” is clear as day.
It’s taken a decade of work, but every vowel, every hard-won consonant, was worth it.
As always, I have to follow this accomplishment with what I like to call the “autism caveat”, which includes the fact that in the future he may only repeat this charming sentence on demand, or perhaps never again. Although his talented speech teacher could easily get him to recreate the experience for me now I won’t ask her to, because it’s enough to know it happened of his own will, his own ability. For just a moment I recall that studies proclaiming that children with autism who don’t speak by four have recently been proven false; that in fact, more than half become proficient speakers, and two-thirds can master simple phrases.
Then my son once again shoves a heavy, huge red bag into my hands, looks at me with utter urgency, and propels me to the door handle. Time for this momma to cease her musings.
I capitulate to his demands and release him from this house, but I am elated at his triumph, and for a few moments I allow myself to bask in it before I contemplate what I’ll make for dinner. I hug his teacher good-bye, and follow his galloping form back to our vehicle, his own sounds of triumph at escape punctuating the brisk air. I acknowledge we just might have the start of something great here.
And as I buckle him into his seat he grins at me, and I swear he knows exactly what he’s done.
February 27, 2013
Wedding Bells Ring
Today’s post will not be about autism.
I know, it’s a stunning departure from my usual topic, but this post is going to be purely FUN, because for seventy-two hours recently I got to leave autism (and let’s be honest, my kids) behind on a trip to Florida for my little brother’s wedding, and I’d like to share. No, today’s missive will be a mostly self-indulgent exercise in how proud I am of my brother, and how much we all love his new wife.
If I don’t see you until next week, I understand.
It is extremely rare that I get away (as rare as having two kids on the spectrum, and there I go, breaking my promise already), and frankly I couldn’t have done it without the help of my brother-in-law and his wife, and my best friend. The only sad part of the weekend for me was that my husband had to stay behind and keep the kids alive, and he truly wanted to be with us to celebrate. The issue was that we’ve never left my eldest son, who has severe autism, with anyone other than his grandmother. Said grandmother stubbornly insisted on seeing her son married, and was thus unavailable.
So, my husband pitched in. Someone had to take it for the team.
We could probably have pulled it off, as our extended family is comprised of very competent people. The truth is, I simply couldn’t leave Justin, who can’t speak and has limited communication even with his iPad, with people who aren’t able to read his mind as Jeff and I can do.
Seriously, by this point in our parenthood journey my eldest son can simply walk over and look into my eyes, after which I can usually discern his need for either food, a potty break, or which DVD he wants from their hiding place in the garage (Jeff and I are so good at this we guess correctly nine times out of ten). At some point I anticipate we’ll be able to leave him sans grandma, but that point hasn’t arrived just yet.
So, this post is for my brother and his bride, with whom we are all completely smitten. Truly, a more beautiful, bright, loving individual does not exist on this planet, and we are all so grateful she found my sibling seven years ago, and brought such peace and happiness into his life. My brother’s path has not always been the easiest of journeys, and it’s just so wonderful to see how they complement each other, how they are truly meant to be together.
If we’d had any doubts (and we didn’t) all we had to do was listen to his speech at the wedding ceremony, with my brother the lyricist pouring all he had into a tribute to his best friend and the love of his life (trust me, there wasn’t a dry eye in the house). Truly, he rocked his vows, just as I know he’ll rock this marriage with his innate kindness, compassion, and loyalty.
So, once again I propose a toast (sadly, with a Coke 90 can rather than champagne) to my courageous, insanely gifted brother, and the stunning woman who will grace his life. I wish you both only the best, and can’t resist leaving you with these parting words, simple as they may be.
To my brother and his bride- live long, laugh a lot, and love well.
February 20, 2013
Downton Abbey Dreams
I’ve recently become a Downton Abbey devotee, am finding this epic saga about the English aristocracy and those who serve them to be absolutely riveting. A good friend of mine convinced me to watch it, knowing that even though I’m more a fan of shows with medieval settings (The Borgias), or serial killers (Dexter), that I would love it as much as she does.
She was right, and whenever I have the time to sneak in an hour of the trials and tribulations of this British family and their staff I claim the couch and remote, and indulge. I’m only halfway through season two (I’m told someone pivotal dies soon, please don’t ruin it for me), but I’m already quite attached to the characters, either rooting for their choices, or alternately (and sometimes simultaneously) appalled by some of their comments.
The story takes place almost a hundred years ago, and as I watch the episodes I’ve had time to think about how much things have changed since the early nineteen hundreds. Women in the UK are no longer struggling to attain the right to vote. Having babies, (or even sex) out-of-wedlock, will no longer (in most instances) get a woman shunned from the world.
I’ve read that being a member of the English peerage is no longer what it used to be, that class lines in England have been blurred and crossed to a considerable degree since we said goodbye to the twentieth century. I can’t see these transitions as anything but a positive outcome of activism, being that I’m a firm believer that we should be judged on our own merits, not on our ancestors’ bloodlines.
I believe most of the characters at Downton Abbey would have my head for that (some of the downstairs staff included).
As I wrapped up a particularly riveting episode last evening (will Matthew make it back from France? Does Sybil find forbidden love with the chauffeur?), I couldn’t help but feel slightly frustrated with certain characters, caught myself judging their narrow-mindedness without considering the weight of societal approval back then. I had to constantly remind myself what being “shunned” meant socially, economically, and emotionally for those who strayed from their appointed class lines, as well as what it meant for those who parted from society’s rigorous moral code.
Still, I longed to reach through my flat screen (if you’re reading this husband, don’t worry, I won’t), and shake those actors at times. I wanted to implore the staff of Downton Abbey not to judge Mr. Bates on his physical imperfections, but instead on the contents of his generous heart. I felt like informing the Dowager Countess that she should just get over herself, and celebrate the fact that her granddaughter might be in love, even if it is with the help. I desired to remind the second Grantham daughter, Lady Edith, that the large stain on her dress at dinner was not nearly as important as the fact that their family’s trusted butler might be dying right in front of her.
I found that last scene particularly galling, but that’s just me.
As I turned off the DVD player last night, remembering how to return to regular cable and being inordinately proud of myself, I found myself wondering what the next hundred years would bring for all of us, particularly those considered “disabled”, either physically, mentally, or emotionally.
For one thing, I hope this century sees the end of the word itself, with the word “differently-abled” being used to replace one that sets limits and defines a person, rather than one which focuses on their strengths and the beauty of their differences. Truly, eradicating this word is more important than you might think, because it sets the stage for how a person is viewed, immediately putting them at a disadvantage.
Along with “retarded”, I’d be happy to see that one go.
I’ve been fortunate enough to live through almost a half century (!) of progress for African-Americans, women, and the gay community, among many others. I’ve read, heard, and spoken to people whose views have changed regarding each one of these groups, and it’s been so heartening to witness not only their acceptance of those who are different from them, but their ability to embrace those differences. I have hope this acceptance will extend to my sons.
It is my greatest wish that my children and their peers will one day live in a world where their differences are respected, not overlooked, but instead celebrated. I hope this will transpire during my hundred years (people in my family live insanely long lives, so there’s hope). Perhaps, if I am incredibly lucky, I will one day look back at the long arm of a century lived and recall with incredulity that people once dismissed those who didn’t conform to a picture of “perfect”, and reflect upon how antiquated those opinions were.
Perhaps I will get the opportunity to smile at their folly, and wrap myself in the certainty that indeed, times have changed, people have changed. I dream that one day I will inhabit a world that has been made a better, more welcoming place for my sons, and all who walk the path of “difference” with them. I dream they will be happy, productive, and respected.
And I hope, along with rooting for Sybil and her outrageous love, that this is one dream that actually comes true.
