A tough day and a scary news article---thoughts on respite

Today was one of those days.  Janey and I were both not in the best of moods.  I tried hard to keep her happy, and I'm sure she tried hard to be happy, but it didn't work out.  From my perspective, I spent hours doing exactly what she wanted---giving her the food she asked for, changing her TV shows, taking her for a car ride, snuggling with her---and then each time I didn't do exactly what she asked the minute she asked, she blew up and screamed at me.  I'm sure her perspective would be different, but I can only speak for sure about mine.  I felt tired, unappreciated, sick of it all.

And then I saw this news piece...  Read it here

But for the kindness of a stranger, this could have been a horrible tragedy.  As it is, it gives an answer, right there, to why I worry so much, why I sometimes give in to despair.  Here, in one of the riches countries in history, in a state with so many resources, THAT'S the best that is offered to care for people like Janey?  I have so many questions about how the man came to be alone on the very busy highway, but at the very, very least, there was some huge negligence going on, and by not reporting him for missing for as long as happened, I suspect some covering up, too.

My friend Michelle and I often joke back and forth with each other when we've had rough days (or weeks or months or years)---"I've got an idea!  Why don't you just get some respite?"  Then we laugh and laugh.  Because basically, there is next to no true respite available.  And when there is, well, that story above illustrates the fears I have of it.  It brought back flashbacks to the one respite I did try---you can read about there here if you wish.

Why is there so little respite, and why, when there IS a chance for there to be respite, or adult care, are there so many problems with it?

There's a few reasons, I think.  One is that unless you yourself have parented, long term, a child like Janey, a child with very little language who functions intellectually at about a toddler level, you don't really get it.  You might be as well meaning as the day is long, but you don't totally understand the EVERY SINGLE MINUTE part of the parenting.  There are no breaks, ever.  You can't let your attention slide.  This does two things.  Because people can't picture how all-consuming the job is, they don't understand why we NEED respite as much as we do.  And when people are hired to provide respite, or, bless them, volunteer to do respite, they often find themselves over their heads.  That was the case with the respite house we took Janey to.  They were hugely well meaning, they were well funded, they were a lovely place.  But they didn't get how much Janey (and other kids, I am sure, but I can only say for sure about Janey) needed to be watched.  

Another reason---our society doesn't value people who care for those with special needs very much.  We don't pay them enough, we don't train them enough, we don't screen them enough.  We as parents care for our children because we love them, because they are precious to us.  And even for us, it's too much sometimes.  I can't tell you how much I welcome Tony's arrival home every night, to give me a break.  I can't tell you how much I look forward to the school bus coming in the morning.  So, if someone else is caring for Janey, someone who is not her parent, I know it's a tough job.  I want that person to be well compensated, well trained and most absolutely well screened.  I want them to be valued, and to be treated as valued, but also I want them held to incredibly high standards.

The third reason is a dark one.  I truly believe most people are very good people.  But some people aren't.  And those people are sometimes drawn to people like Janey, who don't communicate well.  That is a horrible, everlasting fear of mine---that rare kind of person.  Or less evilly, some people snap when they lose patience.  Or simply tune out. Whatever happened the other day with the autistic man in the article---someone "caring" for him either did something cruel and evil, or someone lost patience, or someone tuned out.  And in cases like this, or the case of the many of us with children similar to Janey---well, there can be some very horrible endings.  Or horrible happenings that we never do find out about, because our children can't tell us.  And that, my friends, is why, even in those rare cases where there is respite, or as I look to the future, when Janey needs adult care, I don't have a lot of trust or a lot of hope.  Or a lot of answers.

Dreams of Janey at 30

When I was around 10, I was fascinated with the idea of being 30.  It seemed like it would be a magical age, when all the college and early adulthood would be paying off and I'd be living my real life.  I even wrote a letter to myself at 30, asking what was up with me---was I married?  Did I have kids?  Where did I live?  Was I happy?  Now of course at the ripe old age of 46, 30 sounds pretty young and far away, but I was thinking about that obsession the other day, and got thinking about what life will be like for Janey when she is 30.  My daydreaming took me to several futures for her.

First was the outright anything goes dreaming, where reality does not interfere.  In that kind of dream, Janey somehow wakes up "cured" of autism, completely "normal".  She catches up in school and goes ahead of everyone.  She goes to some exclusive college, gets a high level degree, meets some handsome, rich and kind man, gets married and has beautiful grandchildren for me, who I babysit while she works part-time at a very high paying job.  She buys me a house with an indoor pool.  The world beats a door to our path to figure out how Janey overcame her autism, and we co-write a bestseller about that.  It's a fairytale life.

Then I jolt myself back to reality and think about what kind of actually rooted in real life future I'd dream about for Janey at 30.  In that future, Janey lives with Tony and me.  We are healthy enough to care for her well.  She goes to a high quality day program, where she has interesting experiences and maybe does some kind of sheltered work.  She has her own hobbies and interests, which she pursues in the evenings and weekends.  Several times a year, she goes to a respite home, so Tony and I can vacation or just rest.  She sees this as a vacation too, and it's the same place that someday, when Tony and I can no longer care for her, she will live.  She is happy, as happy as anyone else is, and maybe a little more so, because she has less responsibilities and things to worry about than the rest of us.

And of course, sometimes I start to have the future visions that are nightmares.  Tony and I are gone, or too sick to care for Janey.  She is living in a horrible situation, where she is not well cared for.  She has regressed, doesn't talk, cries all day.  She is too heavily medicated.  She spends her days watching videos over and over and over on a TV that doesn't even come in well.  I close down those visions quickly.  They are too hard to think about.

I tell myself not to borrow trouble.  Janey is only 8.  It's a long time until she'll be an adult.  But time goes quickly.  William is 18 now, and I have no idea how that happened.  Before you have kids, you think people overstate how fast times goes by, but once you have them, you realize they understate it.  It couldn't be more than a few years ago I first saw my tiny preemie William.  But here he is, a senior applying to colleges.  And I know that time will do that trick again, and Janey will be an adult.  And barring the kind of miracle my first dream illustrates, we won't be sending her off with our best wishes.  We'll be caring for her, and depending on a society that might or might not be prepared to provide help to Janey and the many others like her, the autistic people that are no longer cute little kids.  It's yet to be seen if that will be a dream or nightmare.

The Future

My husband turns 50 tomorrow, and next month we will have been married 20 years. It's making me think about the future. At this point in life, a lot of couples might be getting ready for the next phase of life---an empty nest, thinking ahead to someday retiring. Of all the things that having child with significant special needs changes, I think perhaps the most profound is the view of the future. There is no future I can picture without a child in it. Janey won't be a child physically or chronologically, but it's very likely she will be a child mentally forever, and we will be responsible for her as we would be for a child.

I was daydreaming the other day about when Tony retires, how we could take long trips around the country, and I was a little startled to realize Janey was in those daydreams as a natural part, and it wasn't a negative part. I pictured her joy at trying hotel pools, or listening to music in the car, or seeing new places. I edited out her screaming for hours, or making it so Tony and I were never alone, or that kind of thing, but daydreams are always edited a bit. I was happy that my mind could glimpse a good future with Janey in it.

But of course, that's not always the case. I think about things like group homes. I am sure there are wonderful group homes, but I am terrified at the thought. I am scared to death of Janey being abused, or yelled at, or not taken care of well. I've heard that every parents needs to let go at a point, but I can't see letting go of her. I can see it with the boys, because they can take care of themselves, and let us know if something's wrong, but I can't see it with Janey. I try to tell myself---I never worry about those scary things when she's at school. Truly, never. That's a matter of trust and love---I trust the school, and I know the people there love Janey. Maybe I would find a group home like that. But I know how lucky, how lottery-winning lucky, I am that she's in the school she is. I don't know if I'd get that lucky again.

And so, for now, my future will always have Janey at home. And that is usually something I can picture without panic. When you have children, there are no guarantees. No-one ever says "Take good care of them for 18 years, and then you'll get a break". You are playing the lottery with kids just like with so much else. And for the most part, we've been very lucky. There are so many things worse, unspeakably worse, than having a child who will probably never leave home. And heck---she's only 7. I can put the whole thing out of my head for a lot longer, which is something I've gotten fairly good at. So for now, we'll just celebrate the milestones as they hit.