February 29, 2012

Quiet Time

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , at 9:19 am by autismmommytherapist

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:

http://www.northjersey.com/news/health/135814883_Services_for_adults_with_autism_are_woefully_inadequate.html?

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3 Comments »

  1. Misifusa said,

    Wow…just wow..I am thinking of you. xo

  2. M said,

    I must say that having also heard some of the stories it makes me fight that much harder everyday to get my sweet faced boy to as high functioning of a level as possible. I pray that all of our efforts will potentially get him to a place where he might be able to have a job, drive a car, etc. but it’s always in the back of my mind it just might not happen. 😦

    Autism shatters your world as you know it. Gone for many of us are those dreams (well the parents’ dreams anyway) of the day they’ll go off to college, get their own apartments & jobs and slowly that realization becomes more scary because of all of these unknowns.

  3. sigh, it feels like the battle will never end so often.


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