It has gotten easier, but it never ends

When things were toughest with Janey, when it seemed almost impossible to go on, I hung onto the words of friends I'd met through this blog, mothers with older girls with autism, who told me it would get easier.  I had my doubts, but I trusted them to tell me the truth, and they did.  It does get easier.  If I could go back about 4 years in time and tell myself how things are now, I'd hardly believe myself.

It gets easier, but I have to admit something.  Even easier, it's tough.  

Me

It's tough because it's forever.  

Of course, everyone's children are their children forever, no matter how old they get or where they go or what they do.  My boys are home from college as of last night, and they are still my babies.  But in so many ways, my relationship with them is very different than my relationship with Janey.

Janey requires full time care.  She must be supervised, always.  It is not safe to ever have her alone.  That will not change, ever.

Every day of Janey's life, even the smoothest days, we are on alert for her to melt down, to scream, to bite herself, to possibly lash out, to fall apart.  We are never fully relaxed.

Janey needs help with all aspects of self care---dressing, feeding, cleaning herself, toileting---everything.  Large parts of every day are spent taking care of her, at about the level you'd spend taking care of a typical toddler.

Janey's need for routine and for control makes it so when she's home, which is most any time she's not at school, we are not able to listen to music that isn't hers, watch TV that's not what she wants to watch, even just sit casually if we are not sitting the way she wants (without any crossed legs or any crossed body parts at all).  Our acceptance of her needs in this way is a huge part of why life today is easier than it was in the past.  It's a worthy bargain, but it's also a huge limitations on daily life.

Janey's limited speech makes it so we often are guessing what she wants.  We struggle all the time to find a way to let her tell us her needs and to communicate to her what we need from her.  Something as simple as picking a TV show to watch is a minefield of potential misunderstandings and resulting tantrums.

For those reasons and many more, it's tough.  And it's forever.

I've been having a hard time emotionally lately.  I think I'm at the point in my life where I'm thinking "What about me?"  That feels selfish.  And being a mother is absolutely the most important and meaningful thing I've ever done and will ever do.  But sometimes, I think about being at or past the middle of my life,  and how restricted my life sometimes feels.  That isn't all because of Janey, of course.  I'm not exactly a go-getter.  I don't like to drive, I'm a bit of a loner, I have low energy partly by nature and partly as a result of several fairly severe medical conditions I have.  But when I try to think of ways to expand my life, well, there is a large roadblock to almost anything I might try to do.

In the early years of having a child with autism, there is a drive to figure out the child's potential, a possibility of great changes to come.  As the years go by, there comes a point when things slow down, when we realize that there is no miracle cure coming.  It's a good point, in many ways.  It's a point where we can do what Tony and I did a few years back---change our ways of thinking and operating to give Janey the best and most stress-free life we could, so that life was and is easier for all of us.  But it's also a point of realization that this is for good, this is our life and her life.

I have tried over the years to end every blog entry with some kind of hope or positive message.  That is still what I want to do.  I want everyone to know the value of a life like Janey's, how she is important and amazing just the way she is.  But I also want to be honest, because we as mothers are important and valuable and amazing too.  And we get tired.  We get discouraged.  We feel alone.  We sometimes feel hopeless.  We need to keep on going, and by being honest with each other about the challenges as well as the joys of raising our autistic daughters, we can help each other get to the next day and month and year.

Staying Positive---Not Easy

I wrote the other day about using praise and an upbeat attitude to help Janey when she screams and tantrums.  I do think it's a strategy that is going to work a bit, but it's not going to be easy, like everything else with Janey is not easy.

I had a few great successes over the past few days with using the praise.  Janey at one point was doing her loud screaming.  Instead of reacting in ways I've done for many years, which have never worked, I said "when you aren't screaming, I will give you a high five and say 'Great job!'"  Almost instantly, Janey stopped screaming, and I indeed went through a praise routine.  Then I said "What did you want me to do?", assuming that she had a reason for the screaming and the reason was something I could help.  She said "Want Little Mermaid Two!", her favorite movie right now.  I put it on, and she happily watched the whole thing, and Tony and I had an hour of peace.  It was great.

Today, I'm seeing the limits of the technique.  Tony and I are both exhausted.  We got up very early to go out and have a few hours to ourselves while Janey was sleeping.  The boys watched her, but she didn't wake up at all until after we were back.  I'd thought up the very early getting out idea out of desperation for a little time out of the house, and I guess it worked, except once Janey woke up, she was in a terrible mood and we were tired beyond almost moving.  I tried hard to respond to her endless screaming in an upbeat way, but I don't think she bought it.  She got mad enough that she hit Tony hard in the face.

That is where it gets hard to know what to do.  I know the things we have always done just don't work.  There are a couple natural responses to behavior like that.  One is thinking "She can't get away with that!" and yelling, or saying she has to go in time out, or the like.  This does no good, no good at all.  It makes her angrier, it makes the whole bit last longer, often she hits again...it's useless.  Another response is to try to figure out what prompted her to get upset.  This is what the schools have often tried to go, by documenting her behavior and trying to figure out antecedents.  In theory, this seems like a good idea, but in practice, it is very hard to usually see any pattern to her behavior, and the schools have found that too.  Our version of this has been to say "What's wrong?  How can we help?  What do you need?"  Frankly, I don't think anything concrete is usually wrong and I don't think anything we could do will help. She is just upset.  That's Janey.

This is where I like what my friend Antti on Facebook said, that we were using, without knowing it, an approach called Solution Based Brief Therapy.  I looked up more about that, and need to look up even more, but basically, it has a person look to what things would look like if the problem they have were already solved.  What would it look like if Janey was not screaming all the time?  Then, you figure out a way to make that happen.  It sounds kind of simple, but when I think about it, it's a lot different than what has been done with Janey.  What we do often is looking back---giving consequences for the behavior, or trying to figure out the behavior.  In most anyone else, I think those are the right things to do.  With Janey, they have proven over many years to be useless ways of dealing with her.  So instead, I think "How can I most easily get past this screaming to the happy part?" That is where the praise seems to work.

Theories are great in theory.  But in practice, I will admit I'm discouraged, always.  This morning while we were out, a cashier at Trader Joe's said "Well, now you have your shopping done.  You can relax the rest of the day"  In the car, all I could think about was that I never relax.  I never, ever, ever relax.  Even if Janey is fine, the next minute could be awful.  Even if Janey is at school, I could get a call she's freaked out and they want to take her to the hospital.  And after the last few months, even if she seems healthy, I know somehow she could have something horribly wrong physically, and she could not be able to tell us.  I don't relax.

My friend Julie has told me often how her father (who was a psychologist) used to say "People can handle just about absolutely anything, if they know it will be over in time"  I think about that a lot.  I could handle a week of Janey's tough behavior, a month of it, even a year of it.  But there is no end in sight, ever.  Not for the rest of my life.  There isn't a day when we are going to get past this being tough and have the little girl we love so much without the extremely stressful behavior patterns.  I guess I've given up hope that things will get easier.

It's times like this when I think a lot about the other people I know, mostly through this blog, who are also living this life.  I'm thinking a lot of the first friend I made on-line through my writing about Janey, my dear friend Michelle.  Although many people outside of this life sympathize and do the very best they can to understand, I don't think anyone really does except those of you who live it.  I can't imagine life if I didn't know there were others out there who truly get it.  To all of you living this sometimes hellish life, I salute you.  Hang in there.  We have each other.