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.
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January 30, 2011
Someday, I’d like my life back.
I’m not referring to the one I had pre-child, which was a fairly self-absorbed mixture of work, museums, bars, and fighting with my husband over his permanent moratorium on ethnic food. I’m not even alluding to the one I had post-Justin, pre-diagnosis, where I often comforted myself with my grandma’s favorite saying, “this too shall pass”, when most likely whatever was distressing my son for the better part of his days, probably never would. No, I think in the few minutes every morning, before I bribe myself out of bed with the promise of chilled chocolate propelling my tired body forward, those minutes in which I allow my mind to wander both past and present, that what I’d really like to return to is the luxury of one, simple, prior reality.
One day, I’d like to have choices again.
I recently read a wonderful post by Susan Senator, in which she discusses her journey in trying to secure housing for her almost twenty-two-year-old son. As I read it I remember thinking how brave it was for her to put her desires “out there”, to share her need to live a connected yet separate life from her oldest child. When I say brave I mean it, because talking about where your profoundly or moderately autistic child is going to live upon majority is fairly verboten among my people unless you really know those with whom you’re discussing the topic. Long-term care and the vaccine-autism issue is for some of us the equivalent of asking the mainstream world about their politics, religion, or feelings about abortion. Unless you’re particularly close to someone, it’s not often dinner conversation. Topics are undertaken at your own risk.
I realized recently how secretive some of us are about our long-term wishes when the subject casually came up in a dialogue I was having during a playdate, one in which I consider both my son and myself to be the beneficiary of a friendship made, connection forged. Over hot tea I was sharing that Justin seemed to be loving his horseback riding lessons, was exuberant when we made the turn-off every Saturday from the fairly narrow country road to the main thoroughfare that would lead us to the barn. I made mention of how I hoped he’d eventually acquire the skills that would lead to equine care, the grooming, feeding and cleaning of tack that might eventually engender some type of employment for him one day. I closed with my wish that he’d eventually reside either on or near that magical, ethereal farm in my mind, and that my husband and I would live somewhere nearby. I watched her pause, stare at me, and whisper, “You want him to live somewhere else someday too?”, and I realized anew how loaded this subject has become at times within our community.
I also realized, once the words escaped my mouth, how much I do one day wish for him, and for me, an enmeshed, yet divergent, existence.
I love my son. If nothing else is clear from my weekly missives, I’m confident this emotion comes through. I’ve referred to this issue of separation before, mostly during difficult times, when our decades together seemed to stretch out before us in an almost endless dance of distress, days where making it to lunch without a major crisis unfolding seemed an extravagant dream. Through much hard work, relentless repetition of behavioral concepts, and mostly Justin’s innate desire to be happy, we’re finally in a good place now, and yet I find myself compelled to reiterate my previous assertion. Despite the positive changes, I still hope we can procure a safe environment in which Justin will be able to call home one day. I call that desire my own personal mantra.
I know some wonderful families who intend to keep their children with them as long as humanly possible, some with neurotypical siblings who have offered to take up the mantle of caregiver once their parents pass on. I think these parents, and particularly their non-affected offspring, are amazing people. Frankly, I’m humbled by their choice, and I mean this in a completely sincere, non-snarky way. It is the siblings in particular who move me, those who completely understand the restrictions caring for an autistic adult will place on their own lives, yet are willing to undertake the burden and blessing nonetheless. The ones I’ve met who plan on taking this path aren’t martyrs, or passive victims of circumstance. They want to do this. They are, frankly, incredible individuals.
And I, frankly, am not.
Will I rise to the occasion if necessary? Of course. Will I be happy about it? Not on your life. And I will do it because I love my child, and he’s my responsibility, although to be perfectly honest I only undertook the position of parenthood due to the probability the “hard lifting aspect” would be over for Jeff and me after twenty some-odd years. The possibility of long-term care did flit in and out of my brain as I read those pregnancy and baby books, and just as quickly as I concluded absorbing the most depressing case scenarios, they flew out of my head again. Jeff and I were fairly upstanding citizens. We paid our taxes. We made donations to charity. Despite my penchant for writing about wine our liquor consumption was casual and appropriate. Hell, I was even nice to highly irritating children I didn’t even know. I had every hope our clean living would translate into healthy progeny, both in body and in mind.
And ultimately, it did, just with a twist worthy of any conclusion to a current reality show.
Although I don’t believe in the concept of fair, am more a proponent of a more simple aphorism, “shit happens”, I am hopeful the universe will lob another twist my way eventually. I’d like to envision an ending to this story that involves us circumventing the present twenty year waiting list for group home placement in our state, the one where the waiting part only commences when said child hits drinking age. I choose to imagine a nearby residence where my son has known the individuals he’s lived with for years, because his mother has been able to cultivate friendships for almost two decades with like-minded, kind, responsible parents. I’m eager to think that we’ll all look out for each other’s children, create our own type of family, as we share the responsibility of assisting caregivers in keeping our offspring alive, productive, and hopefully, happy.
I long for this for Justin, because he’s initiated outside interactions with others since pre-school, and will most certainly be bored with me by the time he’ll be legally able to vote. I seek this scenario out for him because I know at the very least he will be enthused about living with other adults who will engage with him, that he will actually enjoy what I am certain will resemble a revolving door of caregivers. He is a child, and will one day be an adult, who enjoys variety.
And then, there’s me.
Someday, I’d enjoy the opportunity to return to Europe, or visit my friends in DC on a whim, or just spend the day running around NY with no agenda, no well-executed plans. I’d appreciate the luxury of making a dental appointment without having to secure child-care for my twenty-something offspring. I’d like the chance to have a real sick day spent mired in the folds of my sheets and comforter, watching the Godfather trilogy, or old Everybody Loves Raymond episodes, or whatever reality show I’m pretending I don’t have Jeff record on our DVR. Hell, I’d just be happy to wake up once in a while and have no idea what to do with my day.
And for anyone out there seeking the same eventuality for their own family, here’s a heartfelt wish for all of us longing for the luxury of an empty nest.