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
February 29, 2012
After a ten day stomach flu hiatus, I giddily place two happy kids on their respective busses, wave to them, and head back to the house. This was a particularly virulent strain of the winter virus, pretending to disappear at certain points, then once again rearing its ugly head when we least expected it. Jeff and I made bets as to which of us would get it first, but somehow we managed to dodge that bullet (no character in Macbeth had anything on us this week when it came to hand-washing and Purell).
I’ve accomplished absolutely nothing of a personal nature, but on the bright side, every linen in my house has been washed three times, and we’ve discovered the most fabulous rug cleaner EVER (it’s called Kids ‘N’ Pets, and it’s MAGIC). After one last wave to Justin on his yellow chariot I step over the threshold into our foyer, survey the land, and take a deep breath. It is so very, very, quiet.
How I love the sound of freedom.
I have never been very good with large swaths of unfettered time spent hanging out in my abode, so the last week-and-a-half has been fairly torturous for me. I’ve always liked taking the kids places, even insisted on it in the “dark days” when convincing Justin that leaving the house wouldn’t summon the Apocalypse. I was that crazy teacher who actually enjoyed field trips, and loved to travel in my personal time when finances would permit. This last chunk of time, spent mostly following Justin from floor to floor making sure we wouldn’t witness the return of his last meal, was wearing for me.
I started a half-dozen projects I never finished because Justin would leave the room and I’d follow, which meant my visual cue was gone, and I’d forget why I went there in the first place. Other than keeping the two kids alive (which clearly is important), I didn’t feel like I had a purpose. That “down time” is when I start contemplating my kids’ futures, and mine.
And some of those visual images are not so pretty.
Recently I read an article on NorthJersey.com regarding adults with autism and their care, and I was reminded that no matter how difficult some of our days here seem to us, at least both of my children have a safe and stimulating place to go most days of the week. The daily reality for families in New Jersey with adult children on the spectrum is not nearly so bright. My native state is currently experiencing a serious gap between the amount of adult services available, and the number of adults with autism looking to join these programs. One of the largest issues that stymies would-be providers is, of course, funding.
Somehow, everything always comes down to money.
According to the author of the article, Mr. Harvey Lipman, it seems that although the Division of Developmental Disabilities (DDD) does provide some funding for each individual, the truth is the cost of caring for that person far exceeds the monies provided. Since non-profits are only allowed to make up the difference through charitable fund-raising, a group’s ability to create new programs to meet the burgeoning need for them is often stopped in its tracks due to lack of funds.
In a further twist that makes providing opportunities more difficult, the DDD will no longer fund the agencies directly to initiate programs. Instead, funds will be placed directly in the hands of the families themselves. While technically this enables parents to pick and choose among existing programs, the reality is that the current programs may not meet their adult child’s needs.
If that is the case, families are then put in the position of signing up for a program that does not yet exist, hoping that other families will do the same, and then waiting for that program to come to fruition. In some cases, this has meant a year or more where a parent is required to be home with their adult child, day in and day out, with no guarantee that the situation will improve any time soon.
For any adult with autism (or their parent) who wants to get out of the house as much as we do here, this situation is untenable.
There are many divisions remaining within the autism community, although I see the gaps between different factions have lessened over the years, which is encouraging. My kids remain in single digits, but I’m beginning to watch my friends with teen-agers start to contemplate some really difficult decisions, which puts them on one side of the divide, while I remain on the other.
Over the past few years I’ve listened as friends and acquaintances have thrown out these queries to the world: Where will my child live? Will he have anything to do all day other than stream videos on his iPad? Will we have adequate child-care for my adult daughter, and one day be able to attend our parents’ funerals? Will I spend the rest of my life as a permanent caretaker?
Contemplating these issues definitely puts having two kids with the stomach flu into perspective.
Everyone keeps talking about the tsunami, the tidal wave that’s burgeoning now and will continue over the next decade, where my eldest son will one day join the fray. To me however, the concept of a tsunami conjures up images of great noise and chaos, a very public display of uncontrollable destruction wreaked. I think the reality for many families will be no less damaging, but perhaps a lot quieter.
Careers will be relinquished far earlier than desirable so that parents can babysit their adult child. Events will be missed due to lack of child-care, perhaps a wedding here or there, or a seminal event like taking a son or daughter to college for the first time. Worst of all, families may watch their offspring’s skills erode as boredom and malaise set in, and might witness the undesirable return of aggressive or self-injurious tendencies. Perhaps within the walls of families lacking viable options of productive engagement for their adult children, chaos will reign as well.
Or perhaps, it will just be very, very quiet, without the freedom.
To read the entire article, please see the URL below:
September 14, 2011
When my family returned to New Jersey from Washington five years ago, I knew our daily lives would be taking a very different turn. We traded the Smithsonians for the beach, the monuments for proximity to family, and although at times I truly miss our former existence, there is no doubt in my mind it was the best choice for Justin. For one thing, although the school system where we once lived is nationally recognized, my eldest would never have merited an aide during the early days of his education. I truly believe that having this one-on-one experience in his first years as a student in New Jersey was absolutely integral to his development, and instrumental in the creation of the happy boy I call my son today.
Our family has also benefited greatly from our experience with the DDD (Department of Developmental Disabilities), an agency which affords us the gift of thirty hours of respite care a month, providing me with an extra pair of hands that often enables me to leave the house with both of my kids in tow. There have been other benefits from our relocation as well, including far greater access to social opportunities for the boys through several different organizations, specifically POAC (Parents of Autistic Children), and SSNY (Someone Special Needs You).
I’ve written before about our participation in SSNY, from Easter Egg hunts to Halloween activities, as well as visits from Santa, and carnivals. Vince Scanelli and his wife Gina are the co-founders, and their mission is twofold. First, they provide a monthly arena where children of all ages and disabilities can convene to do crafts and various activities with high school buddies. These teens are carefully selected to pair with the children, and provide them with a wonderful opportunity for friendship. Justin has absolutely reveled in the experience over the four years we’ve been attending the meetings, changing from a child who wanted nothing to do with crafts or teen-agers, to a boy who can’t wait to assemble a leprechaun and hug a pretty girl. He’s grown to love these nights, and in keeping with family tradition, I’ve begun to bring Zachary too.
The second part of their mission includes the creation of a group home on a farm, a topic near and dear to my heart. SSNY has been afforded the gift of twelve acres of land in Colts Neck, and as soon as the “i’s” are dotted and the “t’s” are crossed, construction will begin. It will be a working farm for adults with autism, and will include several green-houses as well. Vince wants to have sheep, chickens and alpaca in abundance (I admit, I had to google the latter, I need to brush up on my farm vocabulary), and hopes to provide a safe and productive atmosphere within which a number of fortunate adults with autism can live and thrive, together.
Amen to that.
SSNY is always on the look-out for new participants for their monthly sessions, and they meet the third Thursday of the month at the Colts Neck Reformed Church, from 6:30 to 7:30 in the evening. They also greatly appreciate donations of any sort toward the creation of the group home. Trust me, it is a daunting task to bring this kind of wide-scale dream to fruition. As Vince and his wife are two of the kindest, most generous parents I have encountered on my New Jersey autism journey, I truly hope they succeed in reaching their goal.
If you’re either interested in attending the crafts sessions or volunteering/donating to the creation of the group home, please click on the SSNY website, and I thank you for your time. The first get-together is this Thursday, 9/15, and all families are more than welcome to attend. Hope to see you there!
Colts Neck Reformed Church
72 County Road 537 West
Colts Neck, NJ 07722
6:30 to 7:30
Third Thursday of the month
Colts Neck Journal article (information on the group home, pages 37 and 38)