December 5, 2016
An open letter to Zach’s teachers, specialists, paras, principals, child study teams (and the gazillion other professionals who helped make him who he is today),
I’ve just finished my bazillionth conference about my boy, the report card crisp and unblemished in my hand as we discuss his progress, a grin on my face reflecting how well it’s going. I didn’t plan on any surprises dear fourth grade teacher because your communication skills are superlative (which greatly reduces the anxiety of this fourth grade mom), but you never know. The stakes are higher this year because we made a big change in Zach’s educational trajectory in the spring. You see, for the last six months he has only had a 504 plan (what I call an IEP light), with accommodations frankly any good educator could carry out in his or her sleep.
And the glory of it is, his present educator, like her predecessors before her, has got this cold.
As a former fourth grade teacher myself I always said third grade was a huge bridge year, and this rang true for Zach, who made leaps and bounds in his ten month third grade stint. The change in his maturity level from September to June seemed miraculous (and yes, much credit goes to the third grade teacher who “got him”), so much so that a little voice told me it was time to shake things up a bit, to really think about whether or not this kid needed a full blown IEP and an inclusion classroom. Of course this contemplation required anxious analyzation on my part, with the requisite “asking of opinion” of every major player in Zach’s educational repertoire, my husband, and my mom with her thirty years of special education expertise.
Frankly I would have consulted a fortune teller if I thought it would do any good.
In true A-type mom fashion I was initially just scared. Scared to let go of the few ancillary services he received knowing they might not be reinstalled if I made a mistake. Scared this would be an unnecessary disaster I brought down on both our heads that could have been averted. Scared he would not be in an inclusion classroom the following year and we’d find he really did need that second teacher.
Scared if I didn’t make this move now I’d be holding him back.
But last spring after a lot of hand holding from his equally wonderful third grade teacher (she got me too) we took the plunge, signed the documents, and I began to hold my breath. We skated through the rest of the year as I knew we would, cognizant of the fact that the true test would come in September, where a zippy fifteen minute 504 plan meeting would replace the round table IEP discussion of my son’s education.
You will hate me, but mostly I look forward to IEP meetings. With two kids on the spectrum, I’ve been to a lot of them. I know everybody’s kids’ names.
So now I’m here sitting in this fairly small chair listening to you tell me how much you like my boy, how even in under three months he’s made progress. I listen quietly as you tell me even though most of the kids in this non-inclusion class are new to him that he’s made friends, gets along with kids when he works in a group, is nailing his academics. You tell me you appreciate his unique world view, his kindness to others, his enthusiasm for learning. You like him, you really like him.
And slowly, I begin to let go of my six month inhale, because nowhere in our dialogue do the words “you made a mistake” surface.
I’m proud of my boy, but not because he’s no longer classified. My other son will nurse various IEPs until he’s twenty-one, and I have no issue with that, am appreciative for the law which entitles him to have them. No, I’m proud of Zach because that kid is damned determined- when he wants something he’s willing to work for it, to break down a goal into small steps until said goal is accomplished. He wants so many things- friends, to participate in a zillion activities, a cell phone (not happening any time soon), and the first two he has in spades, for which I am forever grateful.
And I’m also grateful to all of you. I’m grateful for every teacher, para, specialist, and child study team member he’s had from the tender age of three until now who worked tirelessly to help him become his best self, and tolerated me in the bargain. There are many factors that weigh in on Zach’s success and happiness- his family, his friends, and Minecraft among others. But he literally would not be here today without the women (and a few men) who “got” my boy, reveled in his personality, and never accepted anything less than his best.
There will be hugs and praise, rewards given (food and technology, my son has his priorities), and a mountain of laundry to attack.
There always seems to be laundry to attack.
I will share the good news with the husband, the grandma, and the fifty other people I consulted. I will reward myself with more chocolate. I will hug that damn fantastic kid yet one more time.
And I will exhale.
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February 24, 2015
Last week I had a wonderful IEP meeting. I’m sure that some of you who are reading this may now be on your way to consume large amounts of chocolate (or something much stronger) as you envision you own child’s IEP meetings.
If it helps at all, I’ve been there too.
But recently I got the chance to sit down with Zach’s teachers (both classroom and special education,) his speech therapist, and his case manager to get the low-down on how my son’s doing in school. Academics were discussed (he is on or above grade level in everything- the fact that so far he hasn’t struggled academically is something I’m grateful for every day.)
He’s made strides socially and behaviorally, although these are areas we will continue to work on collectively. And finally, he’s happy, which for me is one of the most important things anyone can tell me in a child study team meeting. The overall assessment was that for the third year in a row Zach is doing beautifully in an inclusion setting, with a half day of support from a special education teacher when he needs it.
But the most important thing I took away from this meeting, something I’ve known since September, is that the staff who care for him truly like and “get” my boy.
There were tales told, like how my child wrote a letter of protest to the principal about how outdoor recess should be reinstated even when it’s -92 degrees, for which he was allowed to petition the principal personally. There was an unrelated missive that landed on his teacher’s desk regarding seat changes in which the word “injustice” was used (the team thinks he’d make a good lawyer.) There was discussion about how he tried to use conflict resolution tactics with classmates even when the dispute was none of his business (we’ll have to work on that one.)
But what really struck me from the meeting was how much the professionals in Zach’s life don’t just permit his unique world views to be expressed- they foster them. These women truly enjoy my son.
And he knows it.
I told Zach he was autistic when he was six year old. I waited until he asked, which one night eventually he did. I had hoped my husband would be there for “the talk,” but he wasn’t, so we forged ahead together. I told him how autism had given him the ability read at an early age, and was probably why he was so good at building things. We discussed how his autism made him unique and special, and was a reason for him to be proud of himself. I asked him if he had any questions.
He smiled, then hugged me and asked for pretzels.
And that’s the key for Zach, or for any child. They all need their unique and wonderful traits to be recognized, encouraged, and praised. Fortunately Zach has found such a haven for five straight years now, and in large part because of it, he is thriving.
There are not words to express how grateful I am.
All I can say is thank you.
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October 28, 2013
I wait patiently to be buzzed in, one hand making the straps of my purse stable on my shoulder, the other rummaging through its contents to make sure my piece of paper with my important questions on it remains inside. In a few moments I pass the necessary inquisition and am ushered through, signed in and seated, waiting to be escorted to a room where Zach’s teachers will be awaiting my arrival.
Soon the school counselor comes to collect me, and we make small talk as we follow the meandering hallways of my son’s school, and finally reach our destination. I take a deep breath and cross the threshold, a bit nervous as this is a pivotal day in Zach’s life.
Today is my son’s thirty day review.
For those of you unfamiliar with the term, the thirty day review examines a student’s special education placement, in our case, a placement in a full-day inclusion class. Zach is part of a community of a number of neurotypical peers as well as children with individualized education plans (IEP), and is fortunate to receive instruction from both a special education teacher and a regular education teacher as well.
I am anticipating that things are going well primarily due to the absence of any negative notes home, coupled with a daily glowing report from my son regarding his teachers, classmates and school activities. I want to hear he’s successful here, that the impulsivity that renders him a challenge has been contained enough to make this a great fit for him. I regard both teachers’ faces and exhale slightly- both are smiling, always a good sign.
I unclench my hands and return their grins, thanking them profusely for making my boy feel so welcome, for all their hard work. I ask how he’s doing, followed with a “is this the right fit” chaser. I am rewarded with a positive response, which allows me to unclench my hands even further. I am told he is bright, seems to be fitting in socially, and still retains the impulsivity/stubbornness that at times makes him difficult to reach.
Together we hash out a plan to conquer one class where he is experiencing challenges, and before I know it the meeting is concluded, truly a stellar start for a boy with a dual diagnosis who often struggles to harness his boundless energy and inquisitive nature. I thank his teachers again and take my leave, proud I sort of remember how to find the exit, relieved the meeting has gone so well and is concluded. I sit for a moment in my steamy car and reflect on what has just transpired, elated that my boy is doing so well. He is thriving in his classroom, finding his niche, his unique self celebrated and embraced.
As I wait for my air conditioning to finally kick in I think about how far he’s come in his continuum of learning, and how I’ve evolved with my perspective regarding his education as well. Five years ago when sickness claimed him and left a mostly speechless, often physically suffering toddler in its wake, I used to lay awake at night and pray for a day such as this. I asked for a day where my youngest son would thrive academically in a mostly typical school environment, a day where he was no longer suffering.
During those dark months after Zach’s regression my goals seemed impossible to attain as we watched him struggle to regain milestones he had once achieved with ease. He was a shadow of his former ebullient self then, a wisp of what he had once been.
I wish I could go back in time and tell my former, scattered self that while a half decade later he would still have an autism diagnosis, I would one day perceive his type of autism as a gift. I would share with that overwhelmed and sometimes distraught mom that while there would be many hurdles to conquer, that his unique self would once again shine through, lighting up our days.
I would assure her that her son’s affectionate disposition would again resurface, that his coveted hugs and kisses would once more become a staple of her day. I would tell her that getting him into that inclusion classroom with its trappings of the “typical life” would not matter so much to her anymore- that his happiness, his ability to achieve the life he wants, would take precedence over his mother’s desires.
Finally I would hug her, give her some chocolate, and tell her it really would be okay.
At last my air conditioning kicks in, and I back out gingerly into the school parking lot elated at what has just occurred, but mostly elated by how it’s all turned out. My boy has his challenges, and like most of us, will likely have them throughout his lifespan. There will be further hurdles to conquer, and chasms to cross. There will be days it will all seem untenable, chased with days of unlimited joy.
But today, there is just a brave little boy with an indomitable spirit who loves his school, and is loved in return. And today, that is enough.
August 20, 2013
“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.
May 4, 2013
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.
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.
October 28, 2012
A warm rain pelts me as I try to open my umbrella to no avail, and I silently curse our local supermarket for selling me a defective product. I soon give up on my pathetic attempts to protect my hair, and instead surrender my locks to the whims of Jersey weather. Quickly I hustle to the door of Zachary’s school and am promptly buzzed in, then wait patiently as I’m given the mandatory nametag proclaiming I’m his mother.
I assure the friendly secretary I know where I’m going (at least this time), and I turn and walk at a brisk pace down a hallway filled with children’s artwork, proudly and prominently displayed. I reach the child study team office and knock lightly as the sign tells me to do, then sit on the vacant bench and attempt triage on my mane. Within minutes I am ushered into the inner sanctum where my son’s principal, case manager, and teachers reside. I take a deep breath, seat myself and wait. Today is Zach’s thirty day review, otherwise known as the day we determine whether or not his mainstream placement is working out.
Not that that’s a big deal or anything.
I have to admit I walked into the meeting feeling fairly confident that for the most part all was well. Zach’s teachers have been great about communicating both the good and the bad, with academics being a strong point, and compliance and focusing in a larger group setting still requiring some work. Together we’ve weathered the morning my youngest decided to freak out about the banana I’d given him to eat for healthy snack day, and told him in no uncertain terms that both at school and at home a lack of gluten-free pretzels does not create a legitimate reason to yell at his teacher.
I’ve also shared with Zach how proud I am of the notes of praise he receives, how his father and I hope they’ll become a weekly staple. Frankly, we’ve also explained to him that attending the mainstream class for two-and-a-half hours in the morning is a privilege, not a right- that he has to behave in order to stay. I recall his eyes grew rather big on that one, but I felt the right thing to do was to let him know. He’s five years old now. It’s never too early to learn about the consequences of behavior.
I can personally think of a few adults who could use a refresher course on that lesson.
Quickly my panel of professionals settles in, and I whip out my notepad and pen, because after dozens of meetings I’ve learned that I retain very little these days if I don’t write things down. I am privy to reports from his special education teachers, his mainstream teacher, and his occupational therapist, and it is clear early on there’s a running theme. Zach is bright, social on his terms, and very interested in working hard as long as the task at hand is something that captures his interest.
Inwardly I smile, as this description depicts about 80% of the students I instructed when I was a teacher. No surprises here.
We discuss the fact that he’ll need differentiated instruction when it comes to reading, as he’s way past “what sound does ‘m’ make?”, is instead voraciously devouring easy-to-read chapter books. One of his teachers asks what his interests are (apparently Angry Birds and Phineas and Ferb are only discussed at home), and she kindly offers to use books including those characters as a reinforcer for both good work and good behavior. I grin again, as the thought of using a book as a reward for my child is just too good to be true.
He may not be thrilled with sand or chocolate, but he is definitely my kid.
Fairly quickly the meeting concludes, with the consensus being that Zach continue in his current program of attending the morning session of mainstream kindergarten, followed by an hour-and-a-half of instruction in a self-contained classroom with other children also bearing IEPs. Although I was anticipating this outcome, I’m still proud. It is both a pleasure and a relief to know we were right about the placement we picked for him in the spring.
There is a special education teacher with him and several other students in the morning, but he is thriving in the midst of mainstream without an aide, at almost an 8:1 child to adult ratio. This is a kid who’s transitioned from a 3:1 pre-school environment, has always had a “shadow” with him when he’s attended camp. Even the latter stricture has been removed from him this summer, as his camp counselor felt he no longer required it, that he “fit in”. All in all, with a great deal of social/emotional growth taking place this calendar year, my boy is thriving.
I thank all of the consummate professionals gathered around this table, a piece of furniture I know for certain is not always the receptacle for such good news. Zach is in wonderful hands, and he is rising to the occasion on a daily basis. He is striving to be included.
As I walk to my car I ponder all of these realities, and settle on the comment made this summer about him fitting in. I contemplate why I want this mainstream placement so much for him, and while the answer may seem obvious (doesn’t every parent want that?), I know it’s not so simple for me. I want Zach to secure his place seamlessly in the mainstream of life because that’s what he wants. I witness his desire every time we’re at a park and he tries to initiate a game. I’ve watched him brave the trials of “typical” when he attempted to insert himself into a group of fellow campers already at play, sometimes to great success. I see his urge to “fit in” revealed every weekday afternoon he tells me I’m boring him.
Full day kindergarten should be a rule, law and a sacred covenant.
Zach wants this life, this imperfect one that his father and I walk, the one which his older brother will never follow. I think of Justin then. I consider my beautiful boy who has also soared with his skills, who reads and delights in words, who has mastered the use of his iPad to get his needs met, who has mostly conquered the need to cry and instead has immersed himself in “happy”. I am so proud. I am so equally proud of them both, so grateful that joy, hope and peace now reign mostly unimpeded in our home.
And as I relegate my lame umbrella to the back of my car I let that often elusive peace settle over me, smile, and head home.
May 29, 2012
It’s almost summertime, a season which conjures up for me a childhood including vast swatches of unfettered time, staying out late, and one or two bad sunburns which I would always deeply regret attaining. Summer was clearly my unabashed favorite, filled with months of limited responsibilities, freedom, and the luxury of sleeping in without the clarion call of an alarm clock reminding me I had a bus to catch.
Clearly, all of this transpired before I had children.
While summer is still my “Cinderella at the ball”, I now have two little kids to care for during the course of its eleven week stay, and with my particular children, those long days can be challenging. While my boys are wonderful (I have to do a bit of mom bragging here), their particular brand of autism includes a great deal of impulsivity, which has made it difficult for me or any other adult to take them out of the house simultaneously.
My goal (at least for a few more years) is never to have to make the “Sophie’s Choice” of deciding whether to address my eldest’s son’s strong desire to leave a venue in under an hour, or choose to rein in my youngest from whatever event or fun-looking toy might be within his reach. I plan on putting two healthy, and hopefully exhausted, little boys to bed every single night of their childhoods.
I still have goals.
My eldest son is fortunate enough to have an eight-week stretch of summer school included in his IEP, and I know how incredibly lucky that makes both me as a parent, and him as a student. Those extra two months of academics and behavioral routines truly help prevent him from regressing during those hot months, a fact for which I am very grateful. While his program does span most of the summer, we always end up having two or three weeks to fill.
Given that Justin generally doesn’t like to remain anywhere longer than the amount of time it takes to watch a sit-com without commercials, filling that void for him has been a challenge. I’ve found over trial and error that he actually prefers to attend a summer camp rather than hang out with his mother all day (he is nine after all). I’ve been fortunate in that I’ve not only found a few that fit his needs, I’ve also located several resources that have assisted us not only in locating those programs, but have provided a stipend as well.
Trust me, many camps for autistic children don’t come cheap.
I can unequivocally recommend two camps in particular, one designed for neurotypical children but who also accepted my boys as participants, and one created to specifically cater to children with disabilities. The first is Olde Riverside School and Day Camp, located on Herbertsville Road in Brick, NJ. Both of my children have attended this program with their “shadows” (helpers our family has paid to accompany them), and had a wonderful experience.
Olde Riverside’s program harkens back to a simpler time- there aren’t any frills to speak of, just good old-fashioned fun. One of the biggest perks of this camp is their swimming program, complete with certified lifeguard/instructors who teach the children their strokes and water safety on a daily basis. Zachary, my youngest, made great strides in their pool (he liked to make the pretty lifeguards proud of him), and I truly saw his confidence as a swimmer grow by leaps and bounds.
While not a huge fan of the swimming program, my eldest child did enter the water every day and enjoyed the routine of camp, where the activities ranged from crafts to read-aloud, and games that changed about every half-hour. Due to his autism diagnosis he was also required to attend with his shadow, and for five summers he truly enjoyed being a camper.
My boy doesn’t like a lot of things, so this is truly a compliment to the staff.
The second camp I can wholeheartedly recommend is Camp Bridge, located in Wall Township on Herbertsville Road, and housed at the Camp Zehnder YMCA. Camp Bridge is specifically geared toward children with disabilities, and has successfully entertained kids with ADHD and ASD (autism spectrum disorders) for many summers. The camp runs from 8:30 to 3:00 which is convenient to parents, and includes a multitude of different activities to draw in the children. Since it’s located at Camp Zehnder Justin also had access to their pool, a welcome diversion for him during those hot days.
The camp’s owners, Bethanie Raichle (a Board Certified Behavior Analyst who works for several local school districts in Monmouth and Ocean counties), and Cyndee Policastro-Smith (a teacher for Toms River School’s autism program) provide a number of activities for the campers. These range from “morning circle” (which helps maintain the school routine) to arts and crafts, plus one field trip per week.
Another bonus is that I felt Justin required a one-on-one aide to participate, and Camp Bridge was able to supply that individual for me, with an extra fee. My eldest has attended the camp for two summers, and will be happily returning this year for a third. Bethanie and Cyndee truly “get” children with autism, and I always felt as if I was leaving Justin in safe and competent hands.
Of course, camps cost money (what doesn’t), and to that end I have found the DDD (Division of Developmental Disabilities) to be a great resource. A month or two after we relocated to New Jersey when Justin was two I applied to this organization for respite care, and eventually I was granted twenty hours a month. Our provider under this agency is the ARC, and through the assistance of my case manager we have had several wonderful individuals over the years who have truly bonded with my boys (some we’ve found on our own, some were suggested to us through the ARC).
There are several programs for respite under the DDD, and the one we’ve chosen pays our helpers directly. In this way we were able to use our monthly hours to send our helpers to camp with the boys to act as their shadows, which really helped offset the cost.
Another way to underwrite the tuition for camp is to contact the DDD directly, and ask for a list of camps that are “DDD-approved” (this is of course only applicable to families who have applied and have already been accepted for services by the agency). I’m told that every year the list of accepted camps continues to grow.
Finally, when my son’s horse-back riding camp had to close due to financial restraints, I wanted to make sure I left no stone overturned in procuring a new location for him. I contacted the Family Support Center of New Jersey (located in Manasquan), and spent about fifteen minutes on the phone with a wonderful employee who conducted a comprehensive search of therapeutic horse-back riding sites in Monmouth and Ocean Counties. She came up with about a half dozen options, one of which will end up hosting Justin this summer. We’ve been out to see it, and although I can’t recommend it because he has not yet attended, the facilities look beautiful, and the instructors could not have been more welcoming.
I see a post “part two” in my future.
I’ll list phone numbers and websites below, and I hope this piece will be informative to any readers with autistic children, or children with other disabilities who reside in central Jersey. Most of this information I happened to stumble upon from other parents who wanted to share their knowledge, and I feel compelled to pass on these opportunities to others. I’ve felt so fortunate in the connections I’ve been able to make for my children, in knowing that the memories they’ve formed from these experiences will reside with them for a lifetime. I wish you best of luck in that endeavor as well.
Here’s to a great summer.
Department of Human Services/Division of Developmental Disabilities
(732) 863-4500 or (609) 588-2727
Family Support Center of New Jersey
November 28, 2010
I attended my oldest son’s first IEP meeting at his new school yesterday, an event which lasted more than two hours, was conducted with consummate professionalism, and was coupled with a level of conversation which actually made my brain hurt afterwards. Before some of you decide to hate me, please know that not every meeting throughout the course of my child’s educational career has been this pleasant. Trust me, my mom and I have really “worked it” in two different states to get to this point.
I have enough PRISE manuals to wallpaper my bathroom now (and I mean the big one).
Most of the meeting itself was unremarkable, filled with discussions of goals we hope are attainable for Justin, lovely anecdotes of how well he’s fitting into his new placement (I’m a sucker for that stuff), and a very cogent explanation of assessments conducted on him up to this point. Other than my noting not a single behavior was deemed worthy of discussion (which is not to say he doesn’t have them, they’re just not prevalent enough to talk about anymore), there were no tremendous “aha!” moments, no surprise concerns. Between my mom and me, somebody only cried once. It was a good day.
In addition to being an IEP get-together this was also technically a “placement review” meeting, and I’m happy to say they’re keeping him (2010 continues to be a banner year chez McCafferty). We all even came to consensus easily on which augmentative device Justin should be upgraded to, since it’s become clear he’s outgrown his Springboard. Within the next few months my seven-year-old will be getting an iPad, and in seven seconds he will understand it better than I will in seven days.
Even though I’m technologically Amish, that’s still saying something.
My mom and I actually had time to grab lunch post-meeting, a rare treat for us, and as we drove over to my cherished local Panera Bread I had a few minutes to reflect on what had transpired over the last few hours. The entire conversation had simply been so civilized, so respectful, so incredibly knowledgeable. Without a moment’s argument my school district concurred with me and my child’s school that the fairly sophisticated iPad was best for my son, and agreed to fork over close to four figures to purchase it. The meeting concluded with a long-term plan which will hopefully broaden entire communicative worlds for Justin. I was in heaven, even without being the beneficiary of a free meal afterwards.
Then, while driving, I remembered an email I’d received that morning about a fellow blogger, one whose son desperately needed the same device, and whose school district clearly wasn’t going to purchase it. I felt a wave of guilt wash over me (sorry, but my Catholic and Jewish buddies haven’t cornered the market on that emotion entirely), and sent one of my silent vibes to the universe that by the end of the day the lovely fundraiser one of her friends had put together would result in its acquisition. I had read a bit about how a borrowed iPad had been instrumental in helping this little boy, and was hopeful a device which had so eased his way in this world would soon be his permanently.
And it struck me, we talk all the time about how lengthy the spectrum is for our children and adults with autism. We can’t forget how wide it is for the parents who are navigating it either.
There are still families residing in a myriad of states where Early Intervention services afford children only scant resources, much as Virginia did for me in the long fifteen months I was my child’s primary ABA provider. Entire school districts in this country remain inadequately prepared to meet the needs of their autistic populations, and continue to struggle financially to alleviate the situation. Despite progress made on this front, many insurance companies still refuse to pay for science-driven, evidence-based therapies, so families can supplement what their children are not receiving in school. And as for my pet cause, long-term care, it was just last week I was told how in one mid-western state the government was encouraging caregivers who could no longer be responsible for their adult disabled children to simply abandon them.
Clearly, this last suggestion is not a viable solution.
I am well aware Rome cannot be fixed in one day. I just have to share that I was really moved this week by such a coming together of minds and hearts, how a community reached out despite its own disparate struggles to help a family most of us have only seen on the internet, and did so willingly. I’ve written often about how I wish our “clan” could learn to respect one another’s stances (and boy, there are many), and I have to say I’ve felt the tide turning this year, have with eagerness watched a growing tolerance for our community’s various views. I’ve also witnessed an increase in tremendous acts of kindness, many from families experiencing a myriad of difficult situations themselves, yet still willing to reach out to others. I feel that within the past year being a member of this multitude has begun to provide entrance to a kinder, gentler world.
And I just want to say, I’m proud.
September 2, 2010
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 my mom, Susan Preston. Welcome!
I have often said that being a grandmother is the best job ever, and indeed it is. I bring to this new “job” as grandmom a perspective that is unusual, since my career was to administer special education programs in public school districts. I had the advantage of working in districts that valued ALL students. With limited resources we would work diligently to find ways to support kids IEP goals and provide the services that were necessary to make that happen. Right now I am so grateful that I retired!
With the current economy and climate towards spending public dollars all too well-known, I can only imagine the additional stresses placed upon administrators, child study team members, case managers, teachers, therapists, etc. The needs of special kids have not changed. In fact, with the rise of children identified with autism, the challenges have only increased. More kids identified and more IEPs, translates into more funds necessary—not less! The challenges for those responsible in public schools now requires even more “thinking out of the box” ideas on how to make this happen. The majority of school district staff has been doing that for years already. Funds can only be stretched just so far to meet the identified needs. The challenges to provide with less must seem insurmountable on a daily basis. Indeed, the challenges have increased and the funds are less!
In speaking with my working colleagues and friends, I continue to be impressed with the caring that they exhibit towards our special kids. It reinforces for me that the individuals who have chosen the field of special education for a career are there for a reason—to improve the lives of special needs kids to the best of their abilities. So whether you are an administrator, teacher, case manager, service provider, etc., know that we as family members appreciate your dedication to our kids. We recognize the additional stresses that have been placed on you now, and know that as a “team” we have to continue to work together for the kids’ sake.
Whatever mixture of joy and pain at having two grandsons with autism has brought, the pride at their accomplishments is many. I thank all of the teachers and therapists through the years who have given us and the kids the skills to become the best that they can be.
Sincerely, Justin and Zachary’s grandmom
June 9, 2010
My oldest son is now seven. He has never spoken a completely intelligible word.
There have been approximations, attempts at articulation that his father, mother, speech therapists, and sometimes his little brother have understood. “Mmm” for mama, “heb” for help, “ob” for open have all graced our presence, particularly in the last six months. His apraxia, the disconnect between his brain and the muscles required for speech, is strong with him. But for the first time in his life I am watching him strain for vocalizations, feel his fingers on my mouth and his eyes on my face as he struggles to imitate on demand, but never to initiate on his own. It is both thrilling and heartbreaking to see him try, to comprehend that he actually wants to talk now, but perhaps will never be able to coerce the sounds he makes into the cohesive whole of an entire word. I imagine he is frustrated by this inability to converse. I am not even certain of that.
Justin was diagnosed with pervasive developmental disorder at the tender age of seventeen months, which was particularly early back in 2004. His father, grandmother, therapists and I quickly immersed him in sign language in order to offer him a way to get his needs met without a tantrum, and to afford him the opportunity to more fully connect with the world. We utilized this approach for the better part of a year, contriving hundreds of trials daily in which we cajoled him into asking for a preferred toy, food item, or book to be read. Sign language was his chosen methodology of communication for well over a year, but despite his obvious intelligence, after fifteen months he had really only mastered half a dozen signs.
When we moved to New Jersey we were fortunate enough to receive the services of the Douglass Developmental Disabilities Center, and the excellent practitioners of my newly formed “team Justin” quickly indicated that sign wasn’t working for my son. They believed we should try PECS, a method of language using pictures that is far more visual in its interpretation, and without the prerequisite of good motor imitation skills integral for success in sign. I initially rejected the suggestion, because studies at the time had indicated that more children who signed progressed into vocal speech than children who employed other methodologies of communication. I resisted heartily, and almost made a terrible mistake because I forgot to utilize one of my strengths- to look at the big picture through the lens of an educator, not a mother.
For years in the classroom my co-workers and I had encouraged different modalities of learning, whether the child came with an IEP or a 504 plan, or just required a diverse way in which to acquire knowledge. It was not unusual for teachers at my school to encourage a student to memorize information for a test in the form of a song, to permit them to walk around the classroom to facilitate knowledge acquisition, or even to allow them to respond orally to a quiz if the written word was too daunting to them. We weren’t heroes. It was just part of our job.
I forgot this big picture approach with Justin for a time, because I was too emotionally invested in what I wanted for him, which was the ability to form the spoken word, to convey thoughts, desires, and initiate conversation. I almost forgot to take into account his strengths, which were technology and visual acuity, and acknowledge his weaknesses, imitation and gross motor coordination, both prerequisites for sign language. I also almost forgot that just because I want him to talk, doesn’t mean he will be able to do so. I can provide every opportunity for him, entrench him in multiple chances daily for understandable utterances, but in the end, whether or not he speaks is up to his ability and his motivation, as are so many other skills I’d like him to attain. I forgot this cardinal rule of teaching, and almost squandered the opportunity for even the most rudimentary communication skills for my son.
Justin soon mastered the PECS program and has since moved on to a more complicated augmentative device, the Springboard, which he uses in conjunction with attempted vocalizations both to request desired items, and to respond in academic situations. He is starting to type simple words on the computer now, employing a simpler version of the “hunt and peck” technique my husband still utilizes to this day. Justin has a typing repertoire of almost twenty words now, with new ones in acquisition daily. It is exciting to watch, and thrilling to witness his pride when the printer spits out his accomplishments so that he has tangible contact with his words.
I temper this success however, as I do his some of his other accomplishments, because I must remind myself that language and communication are two different entities, and the former does not necessarily blossom into actual conversation. It took a long time for me to understand that just because my autistic child was bright and might someday have language, he might not have communication. There are a number of children on the spectrum who are pros at scripted monologues, veritable geniuses at enumerating the myriad characters of Disneyworld, the Island of Sodor, or the Wiggles. They have vocabulary, excellent articulation, perfect diction. They speak. They are not communicating in any utilitarian fashion.
I remind myself of this as I watch him struggle, view his attempts to place his tongue in the correct position for a coveted consonant, or elongate his lips for an elusive vowel. I encourage myself to think “out of the box” about language in general, because this particular child may just not need to connect with people the way that his mother does. His rudimentary successes may lead to more meaningful dialogue one day, or they may not.
What matters most is that he does get his needs met, and no longer feels it necessary to cry, pinch, or stomp his requirements to get them realized. He connects. He is happy. And while I know I will always wish for the trappings of conventional speech, even the mere desire of it from him, perhaps in the end we convey more to one another in our increasingly elongated eye contact than we ever would have with the spoken word.
And I can live with that.