Embracing Chaos

What is it like for a potential caregiver to meet Owen for the first time?  I have to wonder this, as we prepare to interview caregivers again.  Good caregivers move on, their life changes, etc – and caregivers that don’t work out move on even faster.

So it’s a never-ending job, looking for people to provide the support and respite that makes the life of the parent of a very special needs person a balanced life.  Caregivers are terribly, terribly important.

Years ago, when Own was just a little guy in a family of little guys, I our sitters were neighborhood kids.  I can’t believe I went so long without regular respite from the care of him, but I did.  He had his school every day, and on weekends we just powered through.  In those days Owen didn’t stand out so much from his siblings, and I was younger. Our church provided help with Owen on Sundays so I could attend services, and apart from Friday or sometimes Saturday nights staffed by kid sitters, that’s what we had.

When during those desperate times I tried to find some kind of help from organizations like the ARC, they had nothing for me.  They didn’t have a list of possible caregivers and they didn’t connect me with a company that did.  I think their concern may have been lawsuits, being held accountable for caregivers that don’t work out or behave inappropriately or aren’t sufficiently trained. The fact that I was crying into the phone didn’t make a difference.  No one could connect me to a list of providers of care.

As Owen got older and taller, and more physically developed, and the available kid sitters seemed to get younger and shorter, I began to rely on Owen’s sisters and brother to sit.  Owen likes that very much!  Owen’s sibs have always been excellent with him – there’s a strong bond there to overcome the frustration he brings up.   But our other kids have their own lives to live – as they began to leave home for school elsewhere I realized it was time to take my head out of the sand, and do something.

Finally I geared up for action, and put ads in the papers. This was about the time of the recession, and I got LOTS of nibbles.   To many people the $15 per hour we were offering sounded great. But out of 30 or so interested people, maybe one or two were actually appropriate for the job.  Out of that group I got one wonderful caregiver who understood the job well and enjoyed taking Owen for long walks.   But then, alas, that wonderful sitter’s life shifted and she could not continue.

The problem is, watching a person like Owen is not a job for everyone.  Special people require special caregivers.  Specially clever at figuring things out, specially patient, specially gifted with a sense of humor and an appreciation for quirky people.   With younger untrained applicants a typical pattern is to simply stop showing up and not answer my calls when they realize that this job is not for them.  I can be a little slow, but eventually I realize that this energetic young person is not showing up.

In the special needs world, Owen has been considered a peach – he doesn’t hurt himself, he smiles even if he doesn’t always talk, when he talks he says funny things.  He can be snuggly.  But he knows how to be a real PILL nevertheless.  And not everyone lives in the special needs world.  And some people who can deal with one kind of “special” cannot deal with another.

One kindly young man who worked for us a few times came running to get me a few minutes after he had started out with Owen for a nice walk in the woods.  Owen had jumped into the drainage ditch beside the driveway and started stomping, laughing wildly, his shoes and pants covered in swampy black goo.  Presumably, testing.  Such a kindly young man.  He didn’t last long.

Owen’s incontinence is probably the biggest challenge about him.  During one period when we had a lot of new sitters learning the job, Owen must have decided he had had enough of these non-family individuals in his life, and he took incontinence to a new level.  His sitter was a student from University of MD who professed an intention to be a special education teacher.   I wonder if she ever did?  Owen may have changed her career choice when he stood for his potty break and whizzed all over the floor of the bathroom.  The young lady’s response was outrage – she hadn’t signed up for this, she said.

I know just how she felt.

It wasn’t until my friend Sheila (bless her,) mother of a special needs young lady herself,  told me to check out Care.com that I even knew where to look for help.  Care.com is a service that I have no hesitation endorsing here.  All it does is provide names – no guarantees.  I train, I check references, etc.  Of course.  But it has certainly changed my life.  Owen has become accustomed to the sitter thing by now.  He prefers what and who he is used to – he likes his routines – but our sitters haven’t seen anything outrageous lately. (Quick, Kathie! knock on wood!) 

So the interview process begins again.  Sitters come and go in our lives, and we enjoy getting to know them, getting to know their families, their dreams.   We share stories with each other.  And we share Owen.