December 19, 2016
Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Christmas, POAC at 11:23 am by autismmommytherapist
(Editor’s note: I run this piece every year, it just seems to sum up everything. I hope you enjoy it!)
We made a gingerbread house today, my youngest and me. Not the fancy
version mind you, with its cinnamon-spiced cookie walls and sticky-sweet
icing for snow, but the felt version, as I have yet to figure out how
to create an edible construct that’s gluten and casein-free. The form
doesn’t seem to matter to Zach however, as he seems content just to
forge this linen building with craft glue and discretely adhered masking
tape. He is simply happy to sit at our designated table with his mommy,
and design his own.
I am thrilled to be here with him as well, as this is the first
“Christmas house” we have built together, and the added bonus is it
conjures up the requisite images of festive architecture from my
childhood past, pleasant in their remembrance. As I sit with him and
attempt to gain better purchase on the tiny chair I am well aware of the
enormity of this gift, the ability to carry on a tradition with my
child, one who is eager and willing to perform it with me, one who
miraculously was able to request its creation.
It’s the last month of the year, and as always, just like the
commencement of the school year, it’s a time of reflection for me. I
consider where we’ve been and where we now reside as I help Zachary
fabricate his house, watch him carefully separate out the pieces of his
one-dimensional art form with such care, and manipulate the tiny forms
with such ease. He desires to begin at the top of his home and work his
way down, and as I’ve never been one to insist on coloring in the lines
we alter our blueprint a little, an act we’ve committed time and time
again in our tiny family of four.
He begins with the roof, which he tells me firmly we require because
“it will keep everyone warm and cozy”. As I contemplate how he’s
incorporated the latter adjective into his lexicon of words I am
simultaneously reminded of the outpouring of care and compassion we’ve
received over the years, the small and grand acts of largesse, and the
kind words both spoken and written to encourage our clan in times of
conflict. These acts have blanketed us, permitted this family to retain
the heat, the fire necessary to forge through the most searingly
difficult times. We could not have built our own home without them.
Once the roof is safely adhered Zach moves onto the windows, neatly
punching through the cloth panes of glass to afford us a glimpse of the
other side, allowing us to widen our view. I recall how watching my
youngest son’s language expand, and my oldest son’s increasing desire
for social interaction, have both enabled me to envision a different
world for my children this year. We now inhabit a home in which the
future may hold more than just fleeting glimpses of a “normal”
childhood, one in which both of them may actually one day possess a true
friend. I am so grateful for that expanded vista, for the possibilities
inherent in those translucent frames.
Finally, Zach addresses the foundation, shoring up the edges with his
tiny fingers immersed in solvent, asking me if his careful
ministrations are correct. I smile and tell him his house is lovely, as
in its own way, is our own. Our foundation has also been conceived in
patience, moored in consistency, cemented in love. It’s not seamless,
and there will always be cracks. But it will continue to stand.
It will always stand.
And my wish for all of you in every year to come, is that your own
house, no matter how it’s constructed or what form it takes, will
continue to stand, wind and weather-battered, as magnificently strong as
ours.
(I’d like to take just a quick moment to extend my immense gratitude
to all of my readers this year. I am so appreciative of the time taken both to read my
missives and to comment on them, and your continued loyalty. Happy holidays to all!)
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April 18, 2016
Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Parents of Autistic Children, POAC, POAC Lakewood BlueClaws walk-a-thon at 1:45 pm by autismmommytherapist
(Editor’s Note: POAC is a local organization which does so much for autistic people throughout New Jersey, from trainings of educators and police officers to fun activities for families which are always free. Below is a piece I wrote about POAC last year. I’m posting it today because one of their many annual walks is this Saturday, April 23rd, at First Energy Park/Blue Claws Stadium in Lakewood. Registration is at 11:00, the walk begins at noon. For more information please go to www.poac.net. We would love to see you there, it’s not too late to sign up!)
I love POAC (Parents of Autistic Children, Brick NJ.)
I’ll have you know that for me to say I love something is a big deal, as I usually reserve such a glowing pronouncement for my family, wine, chocolate or Game of Thrones (yes, I’m a fantasy geek.) So I don’t pen these words lightly, and I’d like to tell you why.
For the past twelve years I’ve been wrestling with, learning from, and as much as possible embracing autism due to my boys’ diagnoses, and I’ve turned to many different individuals and organizations for help. I’ve been fortunate to receive excellent medical care through Autism Speaks, names of autism providers through Autism New Jersey, and other helpful hints and tips through a number of other organizations. I am grateful for all they’ve collectively done for my family.
But my heart remains with POAC.
In part it’s because I have a soft spot for the underdog, as this wonderful organization is funded solely by private donations. In part it’s because it’s local, and I’ve had the pleasure of getting to know its head honchos, who have been personally helpful to me in the past. If I’m honest though, there’s one main reason I remain faithful (and it’s not just the fabulous food they often have at events.)
It’s that they provide wonderful recreational outings for our families all year long, safe havens where anything goes and autistic children and their families can just be themselves.
Over the past nine years since we relocated to New Jersey I have attended numerous and excellent free workshops about autism that POAC has offered to the public. POAC has also provided my children with opportunities to surf, ride horses, go to Twisters, attend FunTime America, participate in elaborate carnivals at Georgian Court, and a myriad of other fun (and always free!) activities. There have been prolonged periods where it was almost impossible to get my severely autistic child, Justin, out of the house, and yet for the majority of the last few years we were able to attend these events, and at almost every one of them he had fun.
And truly, at the end of the day it should be about what he thinks is fun, not what I think should be fun for him.
POAC is having their annual Lakewood BlueClaws walk-a-thon on Saturday, April 23rd at 11:00 at First Energy Park in Lakewood, and I’m writing today to ask you to attend, or contribute, or both. The event is filled with autism-related vendors, a playground, food, and activities, and culminates in a powerful walk around the stadium, which moves me every single year.
We’re a community often divided. It is amazing to see such solidarity and support come together.
I’m including the link to POAC’s website below. I’ll be there on the 23rd with Zachary, who will be there not only walking for himself, but to support his older brother. I’ll be the short blond desperately trying to keep up with the super-fast nine-year-old (and failing miserably.)
Hope to see you there, and thank-you for reading!
http://www.poac.net/
Follow me on Facebook at Autism Mommy-Therapist
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April 20, 2015
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Parents of Autistic Children, POAC, walk-a-thon at 1:41 pm by autismmommytherapist
I love POAC (Parents of Autistic Children, Brick NJ.)
I’ll have you know that for me to say I love something is a big deal, as I usually reserve such a glowing pronouncement for my family, wine, chocolate or Game of Thrones (yes, I’m a fantasy geek.) So I don’t pen these words lightly, and I’d like to tell you why.
For the past eleven years I’ve been wrestling with, learning from, and as much as possible embracing autism due to my boys’ diagnoses, and I’ve turned to many different individuals and organizations for help. I’ve been fortunate to receive excellent medical care through Autism Speaks, names of autism providers through Autism New Jersey, and other helpful hints and tips through a number of other organizations. I am grateful for all they’ve collectively done for my family.
But my heart remains with POAC.
In part it’s because I have a soft spot for the underdog, as this wonderful organization is funded solely by private donations. In part it’s because it’s local, and I’ve had the pleasure of getting to know its head honchos, who have been personally helpful to me in the past. If I’m honest though, there’s one main reason I remain faithful (and it’s not just the fabulous food they often have at events.)
It’s that they provide wonderful recreational outings for our families all year long, safe havens where anything goes and autistic children and their families can just be themselves.
Over the past nine years since we relocated to New Jersey I have attended numerous and excellent free workshops about autism that POAC has offered to the public. POAC has also provided my children with opportunities to surf, ride horses, go to Twisters, attend FunTime America, participate in elaborate carnivals at Georgian Court, and a myriad of other fun (and always free!) activities. There have been prolonged periods where it was almost impossible to get my severely autistic child, Justin, out of the house, and yet for the majority of the last few years we were able to attend these events, and at almost every one of them he had fun.
And truly, at the end of the day it should be about what he thinks is fun, not what I think should be fun for him.
POAC is having their annual Ocean/Monmouth County walk-a-thon on Saturday, May 16th at 11:00 at First Energy Park in Lakewood, and I’m writing today to ask you to attend, or contribute, or both. The event is filled with autism-related vendors, a playground, food, and activities, and culminates in a powerful walk around the stadium, which moves me every single year.
We’re a community often divided. It is amazing to see such solidarity and support come together.
I’m including the link to POAC’s website below. I’ll be there on the 16th with Zachary, who will be there not only walking for himself, but to support his older brother. I’ll be the short blond desperately trying to keep up with the super-fast eight-year-old (and failing miserably.)
Hope to see you there, and thank-you for reading!
http://www.poac.net/
Follow me on Facebook at Autism Mommy-Therapist
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May 28, 2014
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Parents of Autistic Children, POAC, Rein Dancer Therapeutic Riding Center, therapeutic horseback riding at 10:23 am by autismmommytherapist
Six years ago this fall I took my then five-year-old severely autistic son to a POAC (Parents of Autistic Children) event at Rein Dancer, a farm which provides a therapeutic horseback riding program for riders of all disabilities. I confess I mostly attended to support POAC, as Justin had never shown any evidence of liking animals, and I had a sneaking suspicion he would view riding a horse with as much excitement as eating vegetables (it turns out I was right.)
So despite his disinterest in furry friends my mom and I got him in the car and took him out to western Jersey one fall afternoon, and sat him on the gentlest horse of all time with a good deal of cajoling and prodding.
The entire ride lasted eight minutes and he tried to dismount three times. I sensed “jockey” was not in his immediate future.
Still, some instinct inside of me told me to try again with him, a gut reaction to this day I’m grateful I pursued. I signed him up for lessons, schlepped him out there, and within a month or two he was enraptured with riding, “eeeing” his little heart out on his steed for a day. He liked it so much I even found him a therapeutic riding camp he’s attended most summers since, where I discovered something shocking about my son.
It turns out my boy loves to perform. Frankly, he’s quite the ham.
On the last day of camp every summer the riders put on a show, the duration of which my son beamed, laughed, and made intense eye contact with me and my mother the entire time. I had rarely seen him this happy for so long a period, and decided to pursue opportunities for him to perform in other venues throughout the year. After much research we ended up at Copper Hills Farms in their therapeutic division (Happy Tails run by Lauren Sgroi,) and this past weekend he was able to perform in his first show, all decked out in his brand new riding attire, ready to go.
At first, I thought it was going to be a disaster.
Justin was agitated from the get-go, sensing that today would be radically different from his general lesson days. When it was time for him to mount he first rejected his helmet, then finally acquiesced and allowed me to lead him up the stairs to his ride. He thankfully got on, then proceeded to make his displeasure known for about a third of the show by whining profusely.
Then, about ten minutes in, he simply stopped.
My aunt and I watched as my boy straightened up in his saddle, took a new interest in his surroundings, witnessed the slightest smile spread across his face. He did all his trainer asked as she put him through his paces, even answering a question from the judge (Can you say “hi,” yes my son certainly can) that eventually earned him a blue ribbon in one of the three categories. I saw my son slowly take pleasure in the event, watched as yet another new world opened up to us, one outside of the confines of our home.
I admit, by the end I was already thinking ahead to the next event.
Eventually the show ended and the riders were led up to the fence for their photo opp (you know I wouldn’t miss that,) and I could see my son was eager to conclude his participation in the program, so we quickly led him back to the barn and freedom. As we walked back to the car I asked him if he had fun and he shook his head in a slight “yes,” a response for which on many levels I was grateful.
I smiled at my aunt as I put him in the car, then backed carefully into the dirt road leading us home. I looked in my rearview mirror to see Justin rocking out to Stevie Nicks (he is so my child,) and made a mental note I knew for once I’d remember.
Justin’s made such progress. Don’t be afraid to try new things.
Hell, just don’t be afraid.
And as we pulled into the driveway to conclude part one of our day I let the gratitude wash over me, coupled with a never-ending sense of pride for my son.
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April 28, 2014
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Parents of Autistic Children, POAC, walk-a-thon at 10:56 am by autismmommytherapist
I love POAC (Parents of Autistic Children, Brick NJ.)
I’ll have you know that for me to say I love something is a big deal, as I usually reserve such a glowing pronouncement for my family, wine, chocolate or Game of Thrones (yes, I’m a fantasy geek.) So I don’t pen these words lightly, and I’d like to tell you why.
For the past eleven years I’ve been wrestling with, learning from, and as much as possible embracing autism due to my boys’ diagnoses, and I’ve turned to many different individuals and organizations for help. I’ve been fortunate to receive excellent medical care through Autism Speaks, names of autism providers through Autism New Jersey, and other helpful hints and tips through a number of other organizations. I am grateful for all they’ve collectively done for my family.
But my heart remains with POAC.
In part it’s because I have a soft spot for the underdog, as this wonderful organization is funded solely by private donations. In part it’s because it’s local, and I’ve had the pleasure of getting to know its head honchos, who have been personally helpful to me in the past. If I’m honest though, there’s one main reason I remain faithful (and it’s not just the fabulous food they often have at events.)
It’s that they provide wonderful recreational outings for our families all year long, safe havens where anything goes and autistic children and their families can just be themselves.
Over the past eight years since we relocated to New Jersey I have attended numerous and excellent free workshops about autism that POAC has offered to the public. POAC has also provided my children with opportunities to surf, to ride horses, go to Twisters, attend FunTime America, participate in elaborate carnivals at Georgian Court, and a myriad of other fun (and always free!) activities. There have been prolonged periods where it was almost impossible to get my severely autistic child, Justin, out of the house, and yet for the majority of the last few years we were able to attend these events, and at almost every one of them he had fun.
And truly, at the end of the day it should be about what he thinks is fun, not what I think should be fun for him.
POAC is having their annual Ocean/Monmouth County walk-a-thon this Saturday, May 3rd, at 11:00 at BlueClaws Stadium in Lakewood, and I’m writing today to ask you to attend, or contribute, or both. The event is filled with autism-related vendors, a playground, food, and activities, and culminates in a powerful walk around the stadium, which moves me every single year.
We’re a community often divided. It is amazing to see such solidarity and support come together.
I’m including the link to POAC’s website below. I’ll be there next Saturday with Zachary, who will be there not only walking for himself, but to support his older brother. I’ll be the short blond desperately trying to keep up with the super-fast seven-year-old (and failing miserably.)
Hope to see you there, and thank-you for reading!
POAC
Permalink
April 3, 2014
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged Asbury Park Press, autism, autism acceptance, autism awareness, Autism New Jersey, autism rate New Jersey, Billy Gallagher, Bobbie Gallagher, House Autism Caucus, iPad, New Jersey, Parents of Autistic Children, POAC, Representative Chris Smith, severe autism, Simone Tellini at 11:22 am by autismmommytherapist
Today, as with every day, my heart is bursting with pride for my eldest son Justin, who has severe autism. This week his private autism school hosted a news conference on the eve of World Autism Awareness Day, an event held by Congressman Chris Smith, co-chair of the House Autism Caucus, and Autism New Jersey. As with any news conference there is usually a photo opp, and my son was selected to be the “face of autism” that day (the link is below.) There are two beautiful pictures, a close-up of him apparently contemplating very deep thoughts, and a precious one of him working with his talented and adored teacher.
The accompanying article highlights the high rate of autism in my home state, which is 1 in 45 children in New Jersey, the highest rate in the country. It outlines the work my friends Bobbie and Billy Gallagher did almost two decades ago to bring the rising prevalence of autism in the Garden State to Representative Smith’s attention, an act which contributed to bringing about Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000 (the first comprehensive federal program centered around autism.) I am so proud of the Gallaghers for being pioneers well before autism was a household word, and thrilled that my son’s school was given the honor of hosting the conference.
But as I mentioned before, my heart sings for my son.
Of course it’s fun that his handsome countenance was featured in the Asbury Park Press, the paper of my childhood. I admit, it was a thrill to see him both online (and imagine this) in hard print as well. Quite frankly a few tears were shed yesterday, from both me and my husband too.
But I’m writing about this today not to brag about my son getting media time (okay, maybe it’s a little bit about that.)
I’m writing to you today about hope, and perserverance and love, and never giving up the fight to carve out the best life possible for him, the one he was born to lead.
Ten years ago my son was diagnosed with severe autism. He could barely tolerate anyone in his home, was phobic of strangers, had severe difficulties pairing with therapists, and clung desperately to his parents.
Two days ago he noticed the photographers, acknowledged them briefly, and went about his business of school with a smile.
Ten years ago my son screamed and sobbed whenever anyone tried to work with him, no matter how desirable the reinforcers being offered to him.
Two days ago he worked diligently (and most importantly, joyfully) with his teacher for his coveted bagel chips, but mostly for the love of learning.
Ten years ago we watched as his first birthday came and went, and so did the few vowels and consonants we held so dear.
Two days ago he used an iPad to communicate his wants, and is even beginning to fashion words for us, including two-word sentences which seem like miracles.
Ten years ago I thought I’d never see him smile.
Today, and every day for the past few years, I am witness to the unearthing of his ebullient soul.
Yesterday I cleaned out our local 7-11 of every Asbury Park Press they had (we have a lot of relatives,) and I am certain the photo of my son’s slight smile will make it into his scrapbook. There were phone calls to grandparents, emails to friends, and of course the obligatory status update on Facebook.
As I mentioned before, I’m a proud momma of an autistic child.
But the beautiful part of all this is sometimes I need a not-so-gentle reminder to celebrate how far we’ve come, how our family was forged in fire, and now revels predominantly in peace. My son is happy. He loves his life.
My son with severe autism loves his life.
And nothing in the world could make me more proud.
http://www.app.com/article/20140401/NJNEWS15/304010044/Autism-advocates-urge-more-funding?nclick_che…
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February 24, 2014
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Bobbie Gallagher, Executive Director of POAC Gary Weitzen, Gary Weitzen, Geoff Dubrowsky, Parents of Autistic Children, POAC, POAC Gala 2014, Roe Dubrowsky, Simone Tellini at 3:57 pm by autismmommytherapist
(Gary Weitzen, Executive Director of POAC)
This past Saturday evening I had the luxury of having a girls’ night out with a dear friend at the annual Parents of Autistic Children (POAC) gala, a celebration of fifteen years of their service to the New Jersey autism community. I was deliriously happy to get out of my house (this winter has taken its toll in more ways than one, ask my poor scale), and an event with parents of children with autism as well as autistic adults themselves was something I’d eagerly been looking forward to for weeks.
In addition to good music, good food (a pasta appetizer bar!) and even greater company I always seem to come away from this evening reenergized, more able to focus not only on the issues my two children on the autism spectrum are experiencing, but on their accomplishments as well. And in addition to eating and dancing the night away, everyone in attendance spends a good part of the night bragging about their kids’ successes to people who “get it.”
Frankly, it’s a fabulous perk of the night, right up there with those addictive chocolate-covered strawberries Eagle Ridge always serves at the end.
As my friend Babette and I settled into our table I prepared myself for POAC Executive Director Gary Weitzen’s annual speech (he never fails to make me cry at least once), searching through my night purse for a pen to take notes as my memory (and many other things) aren’t what they used to be. As usual, with his words I was rewarded. Gary did a wonderful job outlining the myriad ways in which POAC, which is the largest provider of free autism training and education in the entire state for both teachers and law enforcement officials, also provides a myriad of free recreational events for families.
(Me, Gary, and fabulous friend Babette)
He also recounted a moving anecdote about his wonderful adult son Chris, regaling us with his desire to hear his then four-year-old child speak just one single word, a wish thankfully granted. Gary went on to inform us that for the past decade-and-a-half POAC had been building a parachute for families, and that now their focus would also include job and residential opportunities autistic individuals over twenty-one. As always, POAC is always looking both to improve their services, and to plan for the future of our children.
I have no doubt they’ll come through for all of us.
The night’s speeches were capped off by a moving slide show featuring autistic children and their families at various events, as well as the volunteers who single-handedly make POAC such a successful autism organization. Traditionally this hails my second crying spectacle of the night, and for once in an effort to preserve my mascara I permitted myself to turn away and take a good look, a really good look, around the gorgeously decorated room.
As I scanned the tables I saw fierce and Congress-celebrated autism advocate Bobbie Gallagher rubbing the shoulder of her beautiful adult daughter Alanna, and couldn’t help but recall how she’d helped me when I first moved to our town, assisting me in navigating the special education component of our school district. I watched as Simone Tellini (Gary’s right hand at POAC) was held rapt by the power point, and thought of the struggles she’d shared with me about her adult son with autism, how she’d moved mountains for him during a time when nobody really knew much about the disorder or truly seemed to care.
As I shifted in my seat I felt behind me the presence of Geoff and Roe Dubrowsky, two advocates who have advised politicians and served on every local, state and federal committee known to man, who also have an adult child on the spectrum. I truly looked around the room at one hundred and fifty people in their finery, all here to support one another as well as the organization hosting them.
I entered that room and saw it mostly full of strangers. By the end of the presentation, I felt myself to be an integral part of a growing, vibrant, and incredibly committed community.
(Geoff Dubrowsky, Gary Weitzen, Roe Dubrowsky)
I’ve been a POAC member since shortly after I moved here in 2008, and I cannot emphasize enough how much this organization has meant to my family, and to countless others in the state. They are a well-spring of information, and provide those all-important recreational events for families in a safe environment, where no child or adult is ever judged. I am truly grateful to them for their continued support, and most importantly for the friendships I’ve made there, men and women whose acceptance, kindness, and humor have helped get this family through some dark times into the light.
It’s possible I appreciate their humor the most.
Whether you’ve had the “autism experience” for over a decade as I have, you have a child who’s newly diagnosed, or you’re simply looking for a wonderful place to volunteer, I can’t recommend POAC enough. I’ll list their contact information below, and I encourage you to reach out, whether it’s to gain help, or to offer yours. We are a community unto itself.
And if you’re seeking a community who cares, you’ve found your home.
Contact POAC at www.poac.net
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December 9, 2013
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged "Santa Claus is Coming to Town", autism, autism acceptance, Bruce Springsteen, Parents of Autistic Children, POAC, Special Olympics at 3:48 pm by autismmommytherapist
As the gates barring us entrance to the farm swing toward us Justin is uncharacteristically quiet, rocking contentedly in the backseat to a muted Springsteen singing “Santa Claus is coming to Town.” It’s appropriate that Sirius is playing this particular tune as the property we’re entering is near to the Boss’s expansive farm, and I briefly wonder if he’s ever visited here, and what my son would make of him if he did.
We park in front of the main building and my mom sneaks into the space next to us, and when my eldest sees her, he breaks into his signature “eeee” and a commensurate smile. We’re a bit early for our appointment so my mom hops into the car to wait with us, and as she does I turn to explain to Justin why we’re here.
Today, my boy is being evaluated for participation in the equestrienne Special Olympics. I really couldn’t be more proud.
Justin’s come a long way from the days when he had a rather tentative relationship with horses. We first entertained the idea of lessons five years ago when POAC (Parents of Autistic Children) asked a barn in Jersey to hold a fundraiser for them. My son was five, and at first regarded the pony he was asked to mount with the same amount of disdain he has reserved for any vegetable I’ve offered to him since birth.
We battled it out that day and got him on that horse which he rode for ten minutes, clutching the beast for dear life and looking at his parents as if we’d gone nuts. I pushed him that day because I had a gut instinct he’d eventually like to ride (although my gut is not always right, surfing was met with an equal amount of rejection, and that’s permanent). I also pushed him because there are only a handful of things he likes to do in winter, and frankly, his mother gets bored.
On occasion, it’s still about me.
He’s made such progress over the last half decade. He’s gone from a kid who basically had to be shoved into the saddle to one who can command his steed to walk and to stop. Justin is even beginning to learn how to steer (although he needs some more work in this area, he drives like his mother), and from what I’m told has a wonderful “seat.” We’re thrilled with his accomplishments both during his lessons and during his stays at camp, but the biggest surprise to all of us is that my boy loves to perform.
Turns out my kid with severe, non-vocal autism is quite the ham.
He’s always smiled at his spectators during lessons, but usually this is quite an intense time for him, so there’s not a great deal of interaction. We first discovered his penchant for attention two years ago when his camp held a last day performance, in which his mother, brother and grandmother were in attendance.
He came barreling out of the back room of the barn that day, and as soon as he saw us a huge grin overtook his face, one which never left him the entire time his instructors took him through his paces. He kept looking back at us at the conclusion of each maneuver, and as we gently applauded him his “eeees” of contentment echoed back to us. Justin was clearly in his element.
His grandmother and I were in heaven.
Based on that day and several subsequent giddy performances my mother and I decided we’d one day give Special Olympics a try, not because we want to see him strut his stuff (okay, that’s part of it), but mostly because we think he’d love the spectacle of it, the crowds, the newness, the possibility of performance. I will share with you that this is a child who once hated even the slightest deviation in routine, from my singing songs in an incorrect order (although he may have been reacting to my voice) to a new take on a character’s voice in a book we’d read many times.
He hated change, and was quite adamant in his expression of said distaste. Although he’s far from reveling in it now, after years of exposing him to various experiences we’re finally at a point where we can try a new farm, attempt to pair him with a novel instructor, and perhaps take him to a completely foreign location next fall where he will get to show off for strangers. It’s not anything I thought we’d ever be able to do nine years ago when he was first diagnosed with autism and was riddled with insomnia, multiple gastroenterological issues, and a general demeanor of constant distress.
Back then, I felt victorious when I could get him into a car.
He’s come so far, my big boy. Every day he stretches my expectations of what I think he can do, shatters many limitations I’ve unconsciously imposed upon him. He amazes me with his courage.
He simply amazes me period.
Today he may not be accepted by this new farm. He may not have enough of the requisite skills, may not react well to the new location, horse, or instructor. Justin may not like this one bit.
Or he may just soar.
And as I take my last sip of lukewarm hot chocolate and listen to the final strains of Springsteen I smile, because in the big picture of things, it really doesn’t matter. My boy is trying new things. He’s happy.
And I’m so damn proud.
Permalink
September 16, 2013
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, Autism Speaks, Early Intervention, memoir, Parents of Autistic Children, POAC, Raising Autism: Surviving the Early Years, Someone Special Needs You, SSNY at 11:36 am by autismmommytherapist
It came in the post today, bound in bubble wrap, so tightly encased it almost defied my interventions to release it. I almost missed it amongst the other packages (we are an “order online” family), came close to passing it over in the rush to get dinner on the table, make lunches, and organize my kids for the next day’s events. Once I realized what it was I took the tie to free it from its confines, and couldn’t help but smile at the weight of it in my hands, both physical and metaphorical.
Today I unwrapped the final proof of my autism memoir about my boys. I must tell you that I am more than a wee bit excited I’m so near to publishing it.
Those of my readers in the autism community (and that’s most of you) may well be thinking, “for the love of God, not another autism- mommy –memoir,” and as there are literally hundreds of them in existence, I hear your angst. Amazon and even the Barnes and Noble bookshelves are rife with this type of writing, and truly, some of them are wonderful reads (I’ve listed a few of my faves at the back of mine).
So why, you may rightly ask, is it necessary to unleash yet another autism memoir upon the world? Well, I’ll share with you that mine is somewhat unique in that it centers around raising not one but two young children on the spectrum, one who is non-verbal and considered severely affected, and one who is more verbal than most and considered high-functioning (there’s a little something for every family here).
Our story spans two states, Virginia and New Jersey, and begins ten years ago, when autism was just beginning to take such precedence in the news and become somewhat of a household word. It describes what it’s like to do thirty hours a week solo with your own autistic toddler without losing your sanity (or at least appearing not to). I share every strategy I’ve used to help my kids acclimate to the world, so there’s a practicality to the memoir as well.
Finally, and just as important as the above reasons itself, it is not a weeper. I’ve allowed my own rather sarcastic humor to shine through, the same humor that was my saving grace while conducting those thirty weekly hours of therapy with my boy. I promise, it will make you laugh.
And even if you’re immune to my humorous charms, by purchasing it you will have contributed to an autism organization, and helped a child.
I’m proud of this book for several reasons (okay, mostly just proud I managed to write one while raising the two autistic kids, but there are other reasons as well). Nine years ago when Justin was diagnosed it became immediately apparent to me that I would have to make my leave-of-absence from teaching a permanent hiatus, as frankly no day care nor nanny would have been willing to care for my son. His behavior was truly that difficult back then, and since principals seem to frown upon their teachers not showing up for work, I knew after his diagnosis it was time to “retire. ”
I also knew resigning my position might effectively end my career, as even back then jobs were hard to come by, and I might not get another opportunity to work. Given that I loved my career and was fairly uncertain as to how being my son’s primary therapist was going to float with him, it was a real time of uncertainty for me. I did feel incredibly fortunate I could stay home with him and help him, since Virginia’s Early Intervention program was, quite honestly, pathetic, affording me eight hours a month of services when my son required at least eighty, if not more.
But despite feeling lucky about our circumstances I realized I still needed something of my own, even if I had to put that dream on hold for a while. I decided that once Justin was in school I would write our story, and use it as a fundraising vehicle. I got a bit delayed by a surprise pregnancy (trust me, a welcome but BIG surprise), and then by my youngest son’s regression (it makes the book longer, you’ll get your money’s worth). Finally, however, I finished it (hurrah!) and will be proud to donate all the profits “from here to eternity” to four different autism organizations- namely Autism Speaks, Parents of Autistic Children (POAC), Someone Special Needs You (SSNY), and my eldest son’s autism school.
I’m really hoping I get to write some big fat checks.
As the publishing date gets closer (I anticipate about 4-6 weeks from now) I’ll be happy to share more about my book Raising Autism: Surviving the Early Years and more information about the organizations I’ll be supporting. Right now however I’m going to go get that manuscript and attempt my final edit(!) while my kids are in school, so wish me luck.
And, as always, thank you for reading and for your wonderful comments!
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August 20, 2013
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, IEP, Individualized Education Plan, Parents of Autistic Children, POAC at 10:58 am by autismmommytherapist
“No, no and no!” my youngest son states emphatically, making a grab for the pretzels he covets, pivoting gracefully in an arc intended to resolved itself by claiming his prize. “I’m not surfing today, the waves are too big!” he yells with deepest resolve, and I respond by plopping down on our wrinkly towel, strategizing rapidly on my way down.
He seats himself next to me with hands outstretched and I accommodate his needs, pressing pretzels into his palm while tipping his face up toward mine. “Zach, we’ve surfed here three years in a row. Every time you say you don’t want to do it, then you go in and you love it. I want you to try it once, and if you don’t like it after that, you can stop.” I look at the professional lifeguards encircling us at a safe distance, and motion for them to move in and make their own pitch.
I hold my breath and wish them luck.
Zach began his “surfing career” through the graciousness of POAC (Parents of Autistic Children) when he was four, and each time it’s a struggle to get him in the water, and each time he exits triumphant, reveling in the majesty of the waves he’s defeated. I’m confident I’ll win this round too, mostly because the professionals in front of us make surfing seem like fun, and my boy loves to be entertained. After a few more minutes of cajoling he scarfs down his last carb, allows himself to be outfitted with a lifevest, and makes a mad dash for the waves.
After his first run he declares “I love this!”, and asks to battle the surf no less than fourteen more times. Eventually even his guardians tire, and he hauls his little body up a steep slope of sand, exhausted but satisfied. Soon more snack is consumed, and I ask him if Mommy was right that he’d love it, and he grins somewhat sheepishly and nods a full-mouthed “yes”. I search my bag for the juice I know he will imminently require, and smile my own satisfied grin.
I pushed him, and this time, it was the right thing to do.
I walk a fine line with Zachary, always wanting to stretch him to his limits without breaking him. My youngest wants to participate in so many of the events the neurotypical world has to offer, but to be present in these situations he’s had to learn some self-control, and that’s not always an easy path for him. This summer he’s held it together in no less than three different camps for the first time without an aide, summer school (okay, that one was with his former kindergarten teacher, I might be cheating here), and his first trip by plane to visit relatives.
I’ve never been more proud of him, not only in the big accomplishments, but in the small ones too- his newfound lack of reticence in sharing with his brother, his ability to put his desires on hold during a playdate, his eagerness to try two novel camp experiences.
He is slowly sliding away from me and into the big wide world of independence. I watch him enter with a mixture of trepidation and joy.
Zach will start full-day school for the first time this year, in an inclusion class without a dedicated aide. I am hopeful this summer of “conquering first” is a harbinger of good things to come, that my boy will be willing to stretch himself further, to fit in but never compromise on the core of who he is. He is utterly unique, loving, and at times, exhausting. He will be such an asset to any classroom if he allows his ebullient soul to override the impulsitivity that often holds him back. I hope his teacher will possess a great modicum of patience, and will see the glorious potential contained in my child’s slight six-year-old frame.
I hope Zach continues to recognize his potential too.
In fifteen days (but who’s counting) I’ll place my son on his bus for the one day of school he’ll have that week (!), and I’ll take a deep breath as I do so. I’ll hope he finds his niche, that his teacher appreciates him for who he is and likes him too, as his educators have all done in the past. I’ll wish for him to form new friendships, for the ones he’s had to date have graced his life, and I know these relationships are something he craves. I’ll want him to love school as I did, to recognize that “fitting in”
only takes you so far, that he must be true to himself as well.
But most of all, I’ll hope this stretching, this new accommodation to a tattered IEP, is the right thing to do too.
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