Laundry leads to an interesting realization

 Starting about a month ago, I began taking Janey down to the cellar with me while I do laundry.  This was partly out of the desperation of looking for activities within the house we could do.  To keep Janey interested, I told her she was going to do the laundry all by herself.

Of course, I didn't really expect her to do the laundry, but that first time, I led her through the steps.  And as so often happens, she surprised the heck out of me.  First I told her we needed to clean the lint screen in the dryer.  She immediately pulled it out, cleared the lint, threw it away and put the screen back.  I think she had maybe seen me do that once, years before.  Then we took out the dry clothes, and she tossed them in the basket.  I put the wet clothes on the dryer door, and she pushed them all in.  Then I told her to close the door, which she did.  The door to the dryer always needs an extra push to stay closed, and she, without me telling her to, gave it that extra push.  Just to see what happened, I told her to turn the timer and turn on the dryer.  I had to help a little with the timer, although she knew right where it was and the direction to turn it.  I had to help not at all with turning the dryer on, even though that involves pushing on another dial that doesn't look like a button.

Then the wash---she tossed in the clothes I gave her.  I poured the detergent in the cap, and she confidently pulled out the detergent holder.  I gave her the cap and she poured the detergent in without spilling, and shut the lid.  I wasn't even that surprised when I told her to start the washer, which involves pushing two different buttons in the order.  Absolutely right, first try.

The whole laundry routine, along with other areas where I've lately been observing Janey's level of competence, has made me think a lot about something.  I was reading something a few weeks ago which mentioned a family with a child with intellectual disabilities.  Instinctively, I thought to myself "Wow.  That must be tough"  And then I realized what I thought.  Because, of course, our family falls into the same category as that family.  Or I would have said so, for many years.

I realized after that reading and thought that I no longer think of Janey as intellectually disabled.  I'm not living in a dream world.  I know that she would and has scored extremely low on IQ tests, that by any academic standard you threw at her, she is in the severely intellectually disabled category.  But that's not how I think of her.  I think of her as...well, Janey.  I think of her as a person with strengths and weakness.  I think of her, often, as a bit of a mystery.  I can't say what's in her head, but the little hints she gives us make me think there's much going on there, much we are not privy to.  

I'm not saying this to tell anyone else what they should think, about Janey or more, about their own children.  It took me 16 years to get to this way of thinking.  I would hear about and agree with the idea of assuming competence, but I didn't truly mentally buy into it. I don't know if I still would word what I feel just that way.  I would say more...we don't know.  We don't know what Janey knows, what she thinks, what she's capable.  But actually, when I think about it, that results in kind of the same thing.  We don't know what she can do, so we need to give her a chance to show us.  We need to keep in mind she's always watching us and listening to us.  She must have observed the heck out of me doing laundry, at the very least, and I'm quite sure there are hundreds of other routines and ideas and conversations she's much more aware of that is visible at first glance.  

I've got some more thoughts on this subject, and on other surprise ways Janey has shown us what she knows.  I'm still planning on a blog entry da day for this week, so stay tuned for more tomorrow!

Three ways of dealing with "Do what I want right this second!"

Janey's brother William is currently on an Amtrak headed to see his aunt Carrie, my sister.  He called this morning to Facetime with me, so he could show me the scenery and I could vicariously enjoy his trip.  However, Janey was in no mood for me to talk to him.  She wanted to go to the store.  She asked, and that quickly elevated to asking in a scream, and then plain screaming, and then trying hard to grab my phone away from me, and that failing, to jumping up and down in fury and biting her arm.  At that point, I told William I had to go.

This kind of scenario has happened a lot this summer.  Janey wants something.  She wants it RIGHT NOW.  She is furious not just if I have to say no, but if I say "in a few minutes" or "not right now".  I've been trying to figure out the best way to handle this kind of setup.  Here's a few of the possible ways...

1----Give in and do what she wants.  To be honest, this is what we've usually been doing for the last few years, as those who read this blog a lot probably realize.  After the horrible year that included the psychiatric hospital and then the medical hospital, both for long periods, we made a decision to make Janey's life as happy as we could by as often as we could having the answer to her wants be "yes".  It's not like we always said no before, but we had tried a more moderate approach.  The boys were younger then, and we hadn't yet quite embraces the philosophy that whatever gets us most quickly to a happy and calm Janey is the quickest route also to a happy and calm us.  Of course, there are things we can't do when she asked, but mostly, she seems to get this and just not ask for those things, like car rides in the middle of the night or salami when there is none in the house.  She asks for things she knows we can deliver, if we agree to, and we try to honor her requests.  It's worked pretty well, but this summer, it's wearing us down.  Maybe it's wearing ME down more, as this is one of the longest stretches I've had her all weekdays without any school.

2----Treat Janey as much as we can like any other almost 14 year old.  Say yes when it's reasonable, tell her to wait when she needs to wait, say no if we just don't want to give her what she wants to have or do what she wants to do.  In some ways, this was our old way of doing things.  It also goes with assuming competence, in a way.  We can assume she can learn in the natural way that sometimes you have to wait and something the answer is no.  It's what most people (especially without experiece with Janey's brand of autism) would see as the right answer.  It's what I always did with the boys, and I must say they responded well to it.  A no meant no.  They were not prone to begging or nagging.  I think I said yes often enough when I could that they learned I wasn't just saying no for no reason.  However, the 10 or so years that I tried to also use this method on Janey were, to be frank, a complete failure.  She was unhappy so much of the time, and she didn't learn, at all, what the boys  learned pretty easily---to be patient, to accept no as an answer.  We gave it a good trial.  If I thought it would work, I'd do it again. 

3---Use a hybrid method.  Accept that the way Janey sees the world and perceives the world and understands the world is not typical, no matter how much I presume competence.  But also realize that Tony and I are human beings, that we simply cannot always do what Janey wants, that the boys, although adult now, also deserve to get their ways sometimes, that we are worn down and tired out and need to figure out a way to keep going.  This hybrid method is what I'm starting to do more.  One part is not responding instantly to Janey.  Sometimes, even if I could do what she wanted right away, I say "Yes!  Just a minute, though..." and then I make her wait a minute.  I've done that approximately 10 times while writing this, the last right during the last sentence, when she asked the most common thing she asks---"Cuddle on the bed?"  Also, if she asks for something we will do in time but not for a while, I say yes and then give the timeline---for example, if she asks for a car ride at noon, I might say "Yes!  Daddy will give you a car ride when he gets home!"  He gets home about 5.  I only do that if it's something we WILL do that day---I'm not going to lie to her.  If the answer is just plain no, I say it but then offer a quick replacement.  If she asks for a ride and I know there will be no ride that day, I saw "No ride today, but we can talk a walk to the store right now!"  Or I say no and then quickly make us busy, so the no is a bit buried in whatever else we are doing.

In an ideal world, the #3 method would work.  I think it could work, not because Janey really will start to understand or accept delays or a plain no, but because waits or substitutes or distractions will become part of a routine, part of what she knows is a possible outcome when she asks for something.  The #2 method relies on an understanding of other people's needs and motives that I quite honestly don't see Janey having.  The #1 method relies on us as parents being responsive in a way that worked for a while, but that I think we are getting too old and tired to carry on, even if it did give us a few very nice years.  In reality, I don't know if method #3 will work.  It isn't working too well so far.  And perhaps there is some #4 method I'm not thinking of right now.  Whatever the solution is, or if there is a solution, as both Tony and I press further into our fifties, I think we need to figure it out.

Janey's post

What would Janey want to say in a blog post, if she could write one?  That has been on my mind lately.  I am a voice for Janey here, because she can't write, and she is what I've found is called low-verbal---she talks, but not much and not always with meaning.  I take being Janey's voice very seriously.  I would love her to be able to say what she thinks, to be able to share insights into her own life with her own voice with all of us.  But I can't make that happen just by wanting it.

The other day, using the idea of assuming competence, which is an idea I like very much but don't always find to be useful, I told Janey about this blog.  It's certainly been no secret, but I realized I hadn't sat down and explained it to her.  To be totally truthful, I don't think she understood what I was saying at all, but I don't know that for sure.  I told her I write on the computer about her, to tell people about what a cool kid she is and to help people understand autism.  When I say the word "autism" to Janey, I have realized I make it sound like I'm saying "Christmas morning" or "huge treat".  I want it to be a word she associates with all good things.  I then asked her if there was anything she wanted to tell people who read about her.  She didn't answer, as is usually the case.  I then did a starter phrase "I want to tell you that..." and she said "I love you!"  It's a very nice answer, but it's also echolalia.  I say all the time to her "I want to tell you that I love you!"  

After a lot more trying to get Janey to say something else, she did---she said "Are we done yet?"  That was actually a phrase that I haven't heard her use a lot, and I listened and stopped talking.

So---I have to guess.  What would Janey want to say?  I don't know.  Janey isn't self-reflective.  She hasn't ever said anything that indicates she understands past or future, or that she gets what autism is, or that she realizes she is not quite the same as a lot of other kids her age.  So I don't think that she'd make profound statements about why she does things she does.  

My best guess is based on what Janey asks for, what she seems to be driven by in life.  I think she'd want to talk about music.  She'd tell you what songs she likes, and what singers.  She'd want to talk about food, especially favorites like Chinese food or tuna or kale.  She'd tell you how she likes to cuddle on her bed, with her favorite special pillow.  She'd want you to know how much she loves car rides with Daddy.  She'd probably want to discuss her favorite TV shows, especially Angelina Ballerina.  I don't think she'd say much about school.  School and home are separate worlds for her, and she's never said one word to me about school.  She might say she's sad or angry, if she is.  She might tell you about Rebecca, my friend Maryellen's cat that for whatever reason seems to be often on her mind.  

I might be selling Janey short.  I've been amazed by videos I've seen of kids that learned to type and had many intense things to say.  But Janey doesn't seem to have a huge urge to communicate, and any attempts to get her to communicate in alternative ways are very quickly shut down by her.  She likes to use her voice, and the words she is comfortable with.  She understands probably 100 times more words than she says, and when she is using delayed echolalia, she shows she can physically talk easily with long words.  But she chooses not to, and I have to respect that.  It's like if someone said they needed to work hard with me to teach me to run marathons, when I've never shown the slightest interest in or inclination toward running.  I'd resist them at every turn.  I might be able to learn to run a bit better, but I'd hate learning and I wouldn't use what I learned.  Maybe it's not that extreme with Janey, but she does seem extremely resistant to my tries to widen her communication.

I'm putting some pictures of Janey on here, because in many ways, that is how she communicates best---by facial expression, by what she does.  I wish you all could meet her in person.  Until then, I'll keep letting you know her by writing about my very cool kid.

On loving the real Janey, not the potential or perfect Janey

For a week or so now, I've been feeling frustrated and upset by a lot of what I see out there in the world of the internet about autism.  I haven't been able to quite put my finger on what has been bothering me until now.

This article somehow cleared my mental clutter a bit and allowed me to put voice (internally and hopefully now to you!) to what I've been troubled by.  It's been a combination of themes that have upset me.  These themes, on their own, are well-meant and progressive, but they combined to send a message about severe autism, low-functioning autism, non-or-low verbal autism, whatever you want to call it (and having to be careful what you call it is another issue).  The message they send is "People with severe autism are not valuable or worth helping just the way they are"

One thing that is said a lot about Janey's type of autism is "Assume competence".  There's a lot I like about that idea, but I realize now there's also a lot about it that can lead to the message above being sent.  Janey isn't a valuable person because of something we have to assume, something that might or might not exist in her.  She's not valuable because she might understand more than she lets on, she might be reading without me knowing it, she might be a musical genius in disguise, she might have a higher IQ than she can show by testing.  She's valuable EXACTLY HOW SHE IS AND APPEARS.  She is valuable even if she never, ever progresses beyond where she is right now.  She's valuable without having to assume anything.

Another trend I see here and there lately is that of never saying anything that isn't positive about parenting autistic kids.  There's sometimes an implication included that if you don't speak only of the wonder and joy of raising your child with autism, you are lacking as a parent, you don't love them, or, at the very least, you are leaving a trail that they might someday read and feel upset about.  Well, I'm here to say that anyone who never has found anything negative about parenting ANY child is at the very least kind of clueless, and at the very most kind of, well, lying.  I love all three of my kids with an intensity that almost scares me.  But there were moments in parenting all three of them that were horrible.  There were scary moments, frustrating moments, moments I felt angry, moments I felt in despair.  In setting aside kids with autism as somehow being different than that, somehow being incapable of provoking any feelings but pride and wonder and joy---that seems to me to be again saying they are only valuable as some kind of fairy tale innocent, some kind of otherworldly being.  Janey is valuable for who she is, exactly how she really is.  I don't have to be careful with every word not to break a bubble of illusion around her, because I love the real Janey.

In so many areas, the thoughts and beliefs of a culture change like a slow-swinging pendulum.  In the past, a child like Janey would be seen as a tragedy, someone to "put away" as to not ruin the lives of the parents and siblings.  I am so thankful that is not the thinking now.  But we have swung to the other end of the line, where Janey and children like her are full of amazing potential and a glowing beacon of perfection in a fallen world.  That leaves parents like us, parents terrified about the future, living a life that is hugely full of stress, getting by from day to day, left feeling like we are somehow at fault, somehow seen as not accepting or loving our children enough.  In my eyes, being honest about children like Janey, the good, the bad, the wonderful, the terrifyingly tough---to me anyway, that is love.  That is love of a real child, not a symbol or a potential or a myth.  I love Janey.  I love my low-functioning, severely autistic child.  I love her, the actual her, the truth of her.  And I know there are many, many other parents like me, and many, many other children like Janey.  I am going to try to keep being brave enough and honest enough to honor Janey by telling the story she can't---the story of a little girl, who, like every child in the world, deserves love exactly how she is.

The Politically Incorrect Enjoyment of Autism Parenting

I've been thinking for a while about this blog entry, and having some trouble putting into words just what I want to say, what has been filling my mind for a while now.  Last week one day, when Janey was having a very sweet day, Tony and I got talking about how sometimes, it's a good feeling to know she'll always be with us.  We watch the boys moving on.  William is in college, and weeks can go by where we barely hear from him.  Freddy is a junior in high school, and busy so much of the time.  Soon he too will be in college, and then they both will be adults.  I hope we stay very close with them, always, but I realize there are no guarantees.  And that is how it should be---kids grow up.  But Janey will not be growing up in that same way.  She will become an adult, but she will always be our child.  I usually say something here like "barring miracles" but I've come to realize the miracles aren't on the way, in our case.  I've accepted that.  And sometimes, I can truly embrace the idea of a child that stays at home forever.

So what's the problem?  Well, there are two ideas that come up over and over again in my reading about autism, both of which I do very much like.  One is autism acceptance---being able to see Janey as valid and important and lovable just the way she is.  I try to do that.  I am not perfect at it---there are days when Janey screams all day or says nothing for many days but "I want strawberry milk" or "I want Kipper" that autism is harder to accept than it is on the better days. But most of the time, I accept her autism, and on the good days, I embrace it.  The other idea is assuming competence.  I want to assume that Janey understands much more than she does, that she maybe even understands everything, that she has abilities that she hasn't shown us.  Basically, the philosophy is not to underestimate Janey, not to rule out anything in terms of what she can do.

So---I accept Janey as she is.  I accept that as she is right now, she will not be able to ever live on her own. She is my child forever, and that is sometimes a good thought.  However, I also want to assume that Janey has untapped potential, that some day, somehow, she might do what I'm told other people with autism have done---she might suddenly show that she can do things like read anything, communicate fully somehow---heck, maybe go to college.  And when I think that way, feeling happy that she is going to always be in my house, be my child forever, seems wrong somehow.  SO---how can I feel both at once?

There are many more examples I can think of like this.  I feel happy that Janey will never experience the nasty side of girls, the mean girls and the bullying.  But that is accepting that she is not going to ever understand social interactions at any kind of higher level.  I love it that Janey loves me wholeheartedly, that she smiles at me at times with the intense love that is uncomplicated by the complex feelings mothers and daughters have about each other as they get older.  But don't I want her to mature, to be able to see me as a real, flawed person she can break away from?  I love how Janey loves music---how she claps and jumps and thrills with excitement when a song she loves comes on, how she remembers any song she's ever heard.  But shouldn't I wish for her to have a mind that is more typical, a mind that doesn't have room for all that because it's learning algebra or history or biology?  I feel glad she will never have her heart broken due to an ended romance.  But I should be dreaming of her being able to experience that romance in the first place.

In short, when I accept the good parts that come with autism, I am also limiting what I expect from Janey.  I feel joy in the parts of her that are childlike and will remain so.  But should I feel only sorrow that she is not going to have a normal adult life?  Is it okay for autism acceptance to be also a joy in what autism has made Janey, even if her limits are part of what it's made her?   I don't know.  I might be just overthinking.  But for now, I'm going to choose to embrace the parts of autism mothering that I can, and to try to do so wholeheartedly, without worrying what that says about me.  I'm going to allow myself to picture what is good about having my child be a child forever.