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.
May 29, 2012
It’s almost summertime, a season which conjures up for me a childhood including vast swatches of unfettered time, staying out late, and one or two bad sunburns which I would always deeply regret attaining. Summer was clearly my unabashed favorite, filled with months of limited responsibilities, freedom, and the luxury of sleeping in without the clarion call of an alarm clock reminding me I had a bus to catch.
Clearly, all of this transpired before I had children.
While summer is still my “Cinderella at the ball”, I now have two little kids to care for during the course of its eleven week stay, and with my particular children, those long days can be challenging. While my boys are wonderful (I have to do a bit of mom bragging here), their particular brand of autism includes a great deal of impulsivity, which has made it difficult for me or any other adult to take them out of the house simultaneously.
My goal (at least for a few more years) is never to have to make the “Sophie’s Choice” of deciding whether to address my eldest’s son’s strong desire to leave a venue in under an hour, or choose to rein in my youngest from whatever event or fun-looking toy might be within his reach. I plan on putting two healthy, and hopefully exhausted, little boys to bed every single night of their childhoods.
I still have goals.
My eldest son is fortunate enough to have an eight-week stretch of summer school included in his IEP, and I know how incredibly lucky that makes both me as a parent, and him as a student. Those extra two months of academics and behavioral routines truly help prevent him from regressing during those hot months, a fact for which I am very grateful. While his program does span most of the summer, we always end up having two or three weeks to fill.
Given that Justin generally doesn’t like to remain anywhere longer than the amount of time it takes to watch a sit-com without commercials, filling that void for him has been a challenge. I’ve found over trial and error that he actually prefers to attend a summer camp rather than hang out with his mother all day (he is nine after all). I’ve been fortunate in that I’ve not only found a few that fit his needs, I’ve also located several resources that have assisted us not only in locating those programs, but have provided a stipend as well.
Trust me, many camps for autistic children don’t come cheap.
I can unequivocally recommend two camps in particular, one designed for neurotypical children but who also accepted my boys as participants, and one created to specifically cater to children with disabilities. The first is Olde Riverside School and Day Camp, located on Herbertsville Road in Brick, NJ. Both of my children have attended this program with their “shadows” (helpers our family has paid to accompany them), and had a wonderful experience.
Olde Riverside’s program harkens back to a simpler time- there aren’t any frills to speak of, just good old-fashioned fun. One of the biggest perks of this camp is their swimming program, complete with certified lifeguard/instructors who teach the children their strokes and water safety on a daily basis. Zachary, my youngest, made great strides in their pool (he liked to make the pretty lifeguards proud of him), and I truly saw his confidence as a swimmer grow by leaps and bounds.
While not a huge fan of the swimming program, my eldest child did enter the water every day and enjoyed the routine of camp, where the activities ranged from crafts to read-aloud, and games that changed about every half-hour. Due to his autism diagnosis he was also required to attend with his shadow, and for five summers he truly enjoyed being a camper.
My boy doesn’t like a lot of things, so this is truly a compliment to the staff.
The second camp I can wholeheartedly recommend is Camp Bridge, located in Wall Township on Herbertsville Road, and housed at the Camp Zehnder YMCA. Camp Bridge is specifically geared toward children with disabilities, and has successfully entertained kids with ADHD and ASD (autism spectrum disorders) for many summers. The camp runs from 8:30 to 3:00 which is convenient to parents, and includes a multitude of different activities to draw in the children. Since it’s located at Camp Zehnder Justin also had access to their pool, a welcome diversion for him during those hot days.
The camp’s owners, Bethanie Raichle (a Board Certified Behavior Analyst who works for several local school districts in Monmouth and Ocean counties), and Cyndee Policastro-Smith (a teacher for Toms River School’s autism program) provide a number of activities for the campers. These range from “morning circle” (which helps maintain the school routine) to arts and crafts, plus one field trip per week.
Another bonus is that I felt Justin required a one-on-one aide to participate, and Camp Bridge was able to supply that individual for me, with an extra fee. My eldest has attended the camp for two summers, and will be happily returning this year for a third. Bethanie and Cyndee truly “get” children with autism, and I always felt as if I was leaving Justin in safe and competent hands.
Of course, camps cost money (what doesn’t), and to that end I have found the DDD (Division of Developmental Disabilities) to be a great resource. A month or two after we relocated to New Jersey when Justin was two I applied to this organization for respite care, and eventually I was granted twenty hours a month. Our provider under this agency is the ARC, and through the assistance of my case manager we have had several wonderful individuals over the years who have truly bonded with my boys (some we’ve found on our own, some were suggested to us through the ARC).
There are several programs for respite under the DDD, and the one we’ve chosen pays our helpers directly. In this way we were able to use our monthly hours to send our helpers to camp with the boys to act as their shadows, which really helped offset the cost.
Another way to underwrite the tuition for camp is to contact the DDD directly, and ask for a list of camps that are “DDD-approved” (this is of course only applicable to families who have applied and have already been accepted for services by the agency). I’m told that every year the list of accepted camps continues to grow.
Finally, when my son’s horse-back riding camp had to close due to financial restraints, I wanted to make sure I left no stone overturned in procuring a new location for him. I contacted the Family Support Center of New Jersey (located in Manasquan), and spent about fifteen minutes on the phone with a wonderful employee who conducted a comprehensive search of therapeutic horse-back riding sites in Monmouth and Ocean Counties. She came up with about a half dozen options, one of which will end up hosting Justin this summer. We’ve been out to see it, and although I can’t recommend it because he has not yet attended, the facilities look beautiful, and the instructors could not have been more welcoming.
I see a post “part two” in my future.
I’ll list phone numbers and websites below, and I hope this piece will be informative to any readers with autistic children, or children with other disabilities who reside in central Jersey. Most of this information I happened to stumble upon from other parents who wanted to share their knowledge, and I feel compelled to pass on these opportunities to others. I’ve felt so fortunate in the connections I’ve been able to make for my children, in knowing that the memories they’ve formed from these experiences will reside with them for a lifetime. I wish you best of luck in that endeavor as well.
Here’s to a great summer.
Department of Human Services/Division of Developmental Disabilities
(732) 863-4500 or (609) 588-2727
Family Support Center of New Jersey
May 20, 2012
It’s 8:30 on a bright, clear May morning, and I’m grateful we’ve finally had a turn in the weather as I trudge on up to the garage that babysat my car overnight. Zach’s IEP meeting is in an hour, and I know I’ll have enough time to claim my vehicle and make it to his pre-school, but I keep my pace at a good clip just to be certain. It’s only Thursday, but it’s been a long week. Three doctors visits with my youngest child, an unidentifiable illness that thankfully did not turn out to be the “scary alternative”, a nail in my tire driving home from said appointment, and an unscheduled “second spring break” with Zach have all frankly worn me out. I pick up my stride just a bit to get my adrenaline going, because this morning’s meeting is the big kahuna, and I need to be on top of my game.
Today, with my son’s child study team, is the day we talk kindergarten.
I’ve requested all his testing material ten days in advance which is within my rights, and frankly I’m going to be very curious to see what the excellent practitioners who comprise my son’s educational world suggest for next year. He’s made staggering progress since he started there a little over two years ago, back when he was a young lad not even three years of age with a somewhat limited vocabulary, and an absolute obsession with Thomas the Train. Half a presidential term later he gives eloquent speeches on the merits of carnivorous dinosaurs versus the herbivorous species, tells everyone who will listen he wants to be a paleontologist, a firefighter, and a dad, and is fascinated by (but not limited to), the entire Transformer family.
Thomas, of course, is so yesterday.
Given the leaps and bounds he’s made I’m wondering which program they’ll suggest he attend, all of which I’ve seen, and all of which have their merits. Kindergarten is still a half day endeavor in this town, and I feel fortunate that if he can handle it he has the option of participating for two-and-a-half hours daily, which I feel will be exactly the right amount of time for him next year. There are also two other choices for after- mainstreaming, both of which involve a self-contained classroom where he could continue to work on his social skills and his often impulsive behavior, the latter of which his parents, teachers, and pediatricians feel is now his biggest stumbling block to full inclusion.
We’ve recently had Zach evaluated at CHOP, and while he still retains that mild autism diagnosis, the entire team at Children’s Hospital felt that he merited an ADHD diagnosis as well, and that the latter diagnosis now more accurately represented him than the former. As an educator I have to admit I was elated, because there are so many strategies to help lesson some of the more severe symptoms of ADHD (many of which I used in my career), and quite honestly, there are a vast array of medications to help as well. Autism doesn’t have as many medicinal options, as we rediscovered this past spring when Justin became ill, and the drug he was taking seemed to completely stop working.
I’m a girl who likes having choices. I’m happy there will be so many for Zach.
I finally make it to the garage and claim my car, and scoot over to my son’s pre-school which is mere minutes away. As I navigate the side roads of Jersey I admit I’m also curious as to which “label” Zach will receive for next year, i.e. one with autism in it, or one such as “otherwise health impaired”, which is doled out for children who have everything from hearing impairment to ADHD. I don’t care which one he’ll receive, as long as it garners him every service and the type of program he requires to succeed. I’ve learned long ago that labels aren’t the important issue, no matter how formidable they may sound. Services, and the educators who provide them, are the key.
And to date I’m so happy and grateful to say, from Early Intervention to pre-school, this child has had the best.
I make it to the meeting with a good ten minutes to spare, and am soon welcomed warmly into the conference room. There are no introductions necessary as I know all of these educators well, and we promptly get down to business. According to his dual diagnoses he still qualifies for special education services, and becomes the beneficiary of the “otherwise health impaired” monacre, which the team agrees now fits him best. As we move on to his test results I am momentarily distracted by the image of my son four years ago after his regression, where within a matter of weeks he lost his almost all of his words, his strong desire for social interaction, and the innate curiosity that dominated his soul. He’s come so very far from those dark days.
And so much of his transformation is due to the people sitting in this room.
After a lengthy interpretation of the many tests required to secure him a recurring spot in special ed, we discuss which program will best suit my son. A four- hour program is suggested, one which offers him both the challenge of mainstreaming for the first time without the safety net of an aide, as well as a small-class setting in which to work on more of his individual goals. I’ve discussed this possibility with his wonderful case manager before, but I admit I’m holding my breath a bit as I ask for him to begin in the mainstream classroom from day one, as a fully included student. No special accommodations will be made for him, other than that the special education teacher who works in tandem with the regular education teacher will devote some of her energies, and time, to him.
I admit I’m both nervous as to what the team will say, as well as concerned about the prospect of him moving from a class of twelve with a 4:1 teacher/student ratio, to a class of twenty with a ratio of 10:1. I don’t want my son to flounder. I want him to fly. The speech teacher looks at me and says something close to, “Of course, let’s try it and let him rise to the occasion. After all, our goal is full mainstreaming by first grade.” I turn toward Zach’s pre-school teacher who’s nurtured and instructed him for two years, and I don’t see her batting an eye. Of course, we won’t know how he’ll handle things until he actually gets in there this fall. Frankly, a lot can happen in four months, for the good and the bad.
But that full inclusion carrot is dangling in mid-air, and I admit, I’m greedy for it.
We quickly conclude the rest of our business together, with brief discussions on how Justin is doing, as well as inquiries made about new additions to certain child study team’s families. An hour plus later we conclude our meeting, one which has been conducted both cordially, and professionally. It was so apparent when every team member spoke of my son how much they respected, enjoyed, and liked my child. I think of how many unhappy parents I encounter or read about on a weekly basis, and once again I am so grateful for what my child has received, the care and cunning that went into creating his educational program for the past two years.
I head out to my car, and this thought creeps into my very tired brain. I hope the future entails that carrot for Zach, because it gives him choices in life, and because he wants the things that full inclusion entails. I think about how proud I’ll be of him regardless of whether our carefully crafted plan works, because he is simply an amazing kid, and always tries so hard. I think about how I’m equally proud of our older child who will never be a part of that world, who is best served at a private school for autism, and I am guessing will always be best served by that brand of education. I remember that we are just concluding teacher appreciation week, and for a moment I am overcome by emotion, by the bounty that exceptional educators have brought to both of my sons’ lives.
And as I have done many, many times over the last eight years that we’ve been on this autism journey, I thank the universe once again for the glory of a good teacher.