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.

Janey's end of the spectrum

I don't like the term "low-functioning autism".  I don't like it, but I use it sometimes anyway.  I use it because "autism" has come to encompass such a range that it's very hard to explain to those who haven't met Janey the level of care she needs. 

Janey

I don't like the "low" part of the word.  Janey isn't lower than anyone.  She's as valuable a part of society as anyone else.  She has much to offer the world.  She is an interesting, complex, talented person.  As she gets older and Tony and I are better able to understand her, I realize that in so many ways, there are easier parts and harder parts of raising any child at any age.  We are used to Janey's harder parts. They are still hard sometimes.  When Janey screams all weekend as she did a few weekends ago, when she is in pain and can't tell us how or where, when we need to change her bed almost every night...that's hard.  But she's 13, and she has never once said she hated us.  She's never made a snide comment in her life.  She is excited, thrilled even, by a drive-through trip to McDonalds.  Her joy when a song she loves comes in in the car---it's a joy so infectious that I can't even imagine much that is better.

However, she has care needs that are far beyond what most 13 year olds have.  She cannot be alone, not for a moment.  She is not fully toilet trained.  She can't read, write or most of the time talk in full sentences.  She cannot dress herself completely.  

Janey will never live alone.  I used to modify statements like that with "most likely..." but I don't anymore.  She is not going to live alone.  She will live with us until we are gone.  Then...well, that is part of why I want a term that explains Janey's needs better.  That is one of the  black holes in my thoughts.

The other black hole, one I can barely think about or write about, is the fear of abuse.  It is why I no longer think much about respite.  I trust Janey's school, and I trust my family, and close friends.  But respite, paid respite, is not coming from those sources. And I can't pay enough to have Janey cared for in the way I would feel comfortable with, not in this part of the country anyway.  I would want Janey cared for by someone extremely knowledgable both about autism and about her in particular, and I would want there to be a formal backup in place for that person at all times.  Caring for Janey is a high intensity job.  If the caregiver needs or wanted a break, they need to be able to take one, and that is where I think often the problems occur---either when someone is at the breaking point or when they leave a child in the care of someone else for a bit.  Respite for people like Janey needs to be a well-planned, well-vetted, well-staffed situation.

Someday, Tony and I are not going to be on this earth.  And before that, someday I imagine a day will come when neither of us can care for her, and her brothers can't either.  And that is where it's going to become important for society in general to understand her needs, and of course not just her needs, but the needs of others like her, those on the higher need end of the autistic spectrum.

If we don't talk about the needs of children like Janey, if we focus only on being positive, or only on children who are more able to care for themselves, we can't expect people to understand what her needs and the needs of her peers are.  There are those who might say I shouldn't speak for Janey.  I can respect that view, but I also respectfully disagree.  Although Janey certainly can communicate, she can't do so in such a way that explains her needs.  I would rather face my last days in the future knowing that society understood and has provided for Janey's needs than having remained silent about those needs.

Call it what you want to.  Call it severe autism, or low-functioning autism, or classic autism.  But there is a huge divide between Janey and a child who will someday be capable of living on their own.  They both certainly may be autistic, in the wide sense of the world, but at the end of the day, Janey needs a higher level of care, and it is desperately important that those with the power to make fiscal and planning decisions realize that.  We need to make society aware that children like Janey exist, and are worthy of the best we can give them.