Looking back on the decade

The end of a year, and in this case, the end of a decade, always prompts us to look back.  I've been doing that a great deal lately.

If I look at 10 years ago now, when Janey was 5, we were heading into some very tough years, years in which Janey was very unhappy and often very angry.  It's hard thinking about those years.  I wish I had known then that things would get as much better as they have.  Janey still is sometimes sad, sometimes angry, of course.  We all are.  But so much more of the time, she is happy, or at least contented.

In thinking about this, I've been thinking about causes.  What made those years so hard for Janey?

One of my leading theories is that during the worst years, the most attempts were being made to teach Janey academically.  Via ABA and classroom work and also at home by me, she was spending lots of her time working on things like letters, numbers, writing and reading.

These efforts were not successful.  At times, Janey seemed to learn a little, to know a few letters or numbers.  At one point around 2nd grade, she could write her name.  But these skills would fade away quickly if not constantly practiced, and sometimes, even when they were constantly practiced.

For a lot of kids with autism, this isn't the case.  I have seen myself the amazing things many kids in classes with Janey have learned.  And of course, we didn't know in advance that Janey wasn't going to be one of the academic achievers.  But I think it could have been predicted a bit more than it was.  I think of how extremely frustrating it must have been for Janey to have to work so much on things that simply were not something she could or wanted to learn.  When I think about that, it's no wonder she acted out so much.

How could it have been predicted?  Maybe by an IQ test.  And I will stop right here, right now, and say I know that IQ is not the only way to measure intelligence. In many ways, Janey is very, very smart.  But IQ tests do measure a specific kind of skill.  It can be said that Janey couldn't be tested accurately, but that in itself is telling.

Janey's IQ was tested at least three times, mostly through studies she was in. I was never given a number.  I guess people thought it would upset me, or that it was meaningless.  But I know she scored lower than the 1st percentile.  I know her IQ is very, very low.  Again, and importantly, NOT her intelligence, but her IQ---a specific kind of skill set.

From my understanding, IQ tests were first developed to understand potential, to see what kind of teaching and classes would be helpful.  I think we could have known early on,based on tests that were done, that what Janey needed was not academic work, but work on her life skills, and most especially work on helping her enjoy the things she IS good at.  I understand in a lot of ways why schools do keep trying to teach Janey and others like her academic skills.  A lot of it is No Child Left Behind type thinking.  But a big part of the reason is hard to put into words.  Trying to, and being blunt, it's that our society places a low value on people with low IQs, people whose strengths are not at all academic.  We try very, very hard to turn people like Janey into someone we feel has more value.

And Janey suffered because of this.  It was not just the school, but also us, at home.  We tried to teach her many things that were beyond her.  We tried to get her to talk more than she was able to talk, to be more perfectly able to use the bathroom than she was able to, to understand rules and rituals that were beyond her.

In our case, it was a dramatic event which changed things---when we almost lost Janey to a burst appendix.  It's the big dividing line in our heads, when we realized how truly precious Janey was to us exactly how she is, when we stopped putting value on what we HOPED she would do and started putting value on what she CAN do, on who she is.

For every child with autism, for every child without autism, for every child at all, there is a different path.  Until our society values people like Janey, we probably will keep trying to put all children on the same path.

What will the next decade hold for Janey?  I hope it holds happiness.  I hope Janey is content with her life.  I hope that for all of you, and all your children.

Happy New Year.

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.