Friday, May 4, 2012

Finding a way

Apparently there's a story in Newsweek's current edition concerning families with children with special needs and the mounting crisis in public funding available to help these families.  Long story short, growing numbers of kids needing help and shrinking pool of funds to help provide it.

This leaves families in a pickle.

I can relate.  After Kelly was born, pretty much every aspect of our life became related in some way or another to dealing with Kelly's Down syndrome, and despite the hopeful predictions of the "experts," we figured out early on there would never really be an end to it, but such was our love for our girl that was okay.  We just went on with life, doing the best we could.

One friend remarked when Kelly was about six weeks old, "You know, you're her primary therapist from here on out.  You'd better get used to it."

I knew it was intended as good advice, but it rankled me something awful and I snapped, "You know, I am her MOM, and I'm going to be her MOM from here on out, and yes, we'll do whatever we can for her but I don't intend to change my job title!"

Little did I dream at the time what all that would entail, even though I began thinking right away about the coming funding crises I imagined would be caused by so many people aging all at once.  Heck, I thought, in 20 years AARP is going to have 4 billion members and where's the help going to come from for my little girl?

So I put a notice in the local ARC (formerly the Association for Retarded Citizens) newsletter saying that I was looking for parents to join with us to purchase a nice suburban home we could use as a group home for our kids when they came of age.

Nobody was interested.  In fairness, most other parents with kids Kelly's age were much younger than we, had other young children, and were struggling and juggling it all with hardly any spare time to draw a breath.  Funds were scarce for mortgage payments and time was scarcer for managing such a property.

So eventually Jerry and I decided to go for it ourselves.  We'd travelled around a bit and looked into all the options.  The least practical one was the most common: take care of her as long as we lived and hope for the best after that.  We were already 42 and 46.  Even the dismal life expectancy for Down syndrome at the time pretty much ensured that she would outlive us.

So we founded Down Home Ranch.  And now all our predictions are coming true.  These days we spend hours every week talking with parents who "want to do the same thing you've done," to which our reply is usually, "No.  Trust us.   You don't."

Frankly, we created the most complicated model possible, and it has required our active involvement  every minute of the 21 years it has taken to do it.

But there are others that accomplish the same purpose in a much simpler and more affordable way.  There's the Mission Project in Kansas City, where parents formed a board of directors, incorporated, and themselves provide the oversight and management for their corps of 14 adults with intellectual disabilities, who live in apartments and over the years have come to rely more on each other than on their parents.

What we wanted, and what the Mission Project founders wanted more than anything else is control over the living circumstances of our kids. We want our values expressed and carried out.  We don't want a situation where everything is fine in the house, and then someone leaves--either a staff person or a new resident--and his or her replacement shows up and ruins everything for everybody.

It can happen, and parents have precious little recourse when it does, unless they are on the board of directors or otherwise invested in a position of influence and authority vis a vis the organization.

Are we sorry we went in such a complicated direction, winding up with a huge capital investment and responsible for running every aspect of what needs to be taken care of, which includes greenhouses, animal husbandry, forest management, and a host of other endeavors not directly related to the field of intellectual disabilities?

No, not at all.  For one thing, my husband Jerry is a true visionary.  He saw and sees ways in which the Ranch can address critical issues and seek solutions for them far beyond anything I envisioned.  It would have been a shame to limit the Ranch's development and opportunities to be a trailblazer.  The best and brightest have attempted along the way to put him in a more manageable box, yours truly included, to no avail.

And the best part is that our Ranchers play an important role in helping the Ranch carry out the ambitious and innovative projects Jerry creates.  They work in sustainable agriculture and aquaponics, they help grow their own beef, eggs, and pork, they help cook the meals and get in the hay.

The essential things we wanted for our Kelly were these: being part of a vibrant community (not being alone), growing in competency to do meaningful work (not having a purposeless life) and being constantly challenged to have new experiences and learn new things (not being bored).

We wanted a place where people with intellectual disabilities could feel completely at home, among people who loved and respected them, in that old-fashioned neighborhood where everybody knows you and where a helping hand is always there when needed.

The best part:  I can honestly say, as one of the 34 neighbors in the Village, that most of the helping hands that reach out to me over the course of a week belong to our Ranchers.  They are capable, they are caring, they know the people and the ropes and what to do in an emergency.  We celebrate together, and we squabble with each other, but in the end we work things out.

No.  Not sorry one bit.

1 comment:

  1. Beautifully expressed. When I visited recently, I found the ranch to be a vibrant community and a celebration of life.