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.

Does it get easier?

Lately, I've told a few people with young autistic kids that it gets easier.  I've always thought the hardest age is around 4, and from that point on, it gradually does seem not quite as tough.  However, I don't like to tell people falsehoods, and I spent a long time  yesterday trying to figure out in my mind----Does it really get easier?

In giving my answer, of course I need to say I have only my own experiences to go by.  Janey is not typical, even with the autism world, I don't think.  No child is typical, but Janey has not really followed even the autism guidelines.  She has not "improved" significantly since she was diagnosed, in terms of speech or academics.  She is on the low end of the spectrum, so that has been my experience.  My other child originally diagnosed with autism is also not typical, as I think he was a wrong diagnosis, but if he wasn't, his improvement is far beyond what you'd usually see, in that he hasn't been on an IEP since 5th grade and will graduate this June with an over 4.0 GPA.  So maybe I am not the person to ask if it gets better, but I will answer anyway!

And my answer is yes, but not for the reasons you might think.  I don't think it gets easier because the child themself gets easier.  I think that's what I used to think, and of course they do, in a lot of ways, maybe more for other people than me, but they do.  But what really makes it easier is that you settle into your life, you find the right situations for your child, you change your definition of "easy."  It feels easier, although it might not, from some unreal strictly mathematical viewpoint, it might not be.

You settle into the life.  When a child is first diagnosed, it seems like an acute illness.  You feel like you have to do something NOW (and the media and some of the autism community feeds into this).  You feel there is not a moment to waste.  You are rushing around, finding a program, setting up appointments, finding a school, making big decisions.  It's hectic and scary.  Then you are transitioning into all the programs you set up, and anyone knows most autistic kids don't like new places or new experiences.  It's a confusing, scary, terrible time.  But jump from that age, around 2-4, to age 8, where Janey is now.  Unless you've been extremely unlucky, your child is in a school you like.  You've settled on an approach to the autism, you've met other families hopefully, you are an old pro.  Your life is not as hectic, and your child is not starting some new program every other day.  It's the comfort of routine.

The other part is a little harder to think about.  But I think it gets easier because you start expecting less from your life.  Nobody wants to think this.  We don't want to think that our child with autism is going to change our whole life, but like it or not, they will.  When you make the jump from first diagnosed to around age 8, you have already changed your life.  You no longer expect things to go smoothly, and when they do, it feels wonderful.  You have probably pared down your friend list to those who at least try to "get it", so you aren't dealing with people who are unwilling to accept your new reality as much.  You have changed your hobbies and cooking and work life and every other part of your life to accommodate your child.  It's the new normal. And when a day goes well under the new normal, you feel good about it.  You delight in little things that in the past would have gone unnoticed---drinking a full cup of coffee uninterrupted, the delightful 90 minutes a video takes to play out when you get to read a book, your child saying something new or not reversing pronouns or getting half dressed by themselves or using the potty.  Littler things can make you thrilled.  I'm not being a Pollyanna here.  I've read that after hugely good or bad fortune in a life, most people eventually return to the same level of happiness as before the fortune, and I think that's true.  You start to have a normal life again---a new normal, hugely modified, but it doesn't feel that way.  It just feels like life, most of the time.

So yes, I think it does get easier.  Or at least it FEELS easier.  And that's about the same thing, really.