"William lives here too"

We've had a lot of success over the past year with new approaches to Janey's behavior and our responses to it, which I've written about a good deal.  In a nutshell, we've realized if we let her follow routines, and we focus on behavior outcomes more than on how we get to those outcomes, life is a lot easier for all of us.  However, there are limits to this approach, and we've been running up against them lately.

Janey and her big brother William

The difference in the last month is that Janey's brothers are home from college.  It's great having them home, for Tony and me.  Janey adores her brothers, and was very excited at first having them here.  But they don't always fit in with the routines she's set up for herself over the school year.  Often, they don't obey the rules she's made---rules like "Nobody can be in the living room with me while I watch TV", or "No music can be played in the house except as approved by me" or "Daddy and Mama give all their attention to me when I ask for it".

When I have read books about parenting kids with autism, especially the extreme "I cured my child" books, one thing I noticed often is that siblings are pushed to the background.  Either there are no siblings, or you get lines like "Of course, the other children often wound up missing out on our attention, but in return they learned so much compassion and love!"  I swore I'd never have that attitude.  Luckily, Janey's autism came to the forefront right around when the boys were reaching the age that less attention from Mama and Daddy was not a bad thing.  I have guilt that will last forever at events I missed and times I was too tired to listen well, but overall, I think Janey being seven years younger than Freddy, and ten years younger than William, was a lucky thing.

However, as anyone with adult or young adult children living at home knows, they still need you at times.  And I don't ever, ever want them to feel like Janey is more important than they are.  But what do you do when a force like Janey's will meets a force like her brothers?

The answer is---I often just don't know.  For Tony and me, the peace and calm that comes from letting Janey control the things she can control is so worth it.  But what do we do when Janey quite literally pushes William out of the room he wants to be in?  What do we do when she screams because Freddy is trying to show me something on the computer?

Generally, I stand firm.  I say things like "William lives here too.  William has a right to be in the room.  Freddy can watch a video on YouTube just like you can"  But, as I've written about, just being firm doesn't work with Janey.  Her routines, her need to control her environment---these things are not something she can change easily based on rewards or deterrents or our attitudes or words.

Over the last week, I've seen the return of some disturbing behaviors I haven't seen Janey show in a long while.  Last night, when I told her that she couldn't use the big TV right when she wanted to, she lunged and tried hard to bite me.  Only a quick reaction on my part stopped her.  This morning, when I was putting on her shoes, she wanted me to use the shoehorn, as Tony usually does.  When I didn't immediately comply, she tried her hardest to break the shoehorn she'd brought me, and almost succeeded.

So---what do I do?  It's one of those cases without a right answer.  All my kids are important to me.  The boys certainly have modified their lives and behaviors a huge amount over the years, but I am not willing to tell them they can't even be around, which is what Janey quite plainly wants at times.

All this is making me think of how extremely difficult it must be for those of you with children close in age to your child with autism.  It's something I have never had to deal with.  Like with so many ideas for dealing with autism that might work for one family but not another, many of the approaches we've had success with would quite literally be impossible if Janey had a close age sibling, or if not impossible, extremely unfair to that sibling.

We'll see how the summer plays out.  I'm glad Janey is still in school for now, and will be in summer school for a good chunk of the summer.  But I'm worried about the changes in behavior, worried with the fear of someone who has seen just how tough things can get.  I hope they don't.

"I am angry, Daddy"

A few nights ago, when Tony had just come home from work, Janey went over to him and spoke the words in the title---"I am angry, Daddy".  It's hard to describe, but I think many of you are familiar with what I'm talking about when I say those moments are sort of like miracles.  They make you feel like you are in a dream, or living another reality.  For Janey to just go over and say that, and not reverse the pronouns, and state clearly how she felt---well, it's something amazing.

When I think about it, it's also something we have worked hard on, and so has her school.  Both the school and we have worked for years on helping her identify emotions. But still...to have her suddenly say something like that, it always feels unexpected.

I used to read a lot of books about kids with autism, before I had such a child.  Call it premonition, or something.  Now I realize many of those books were selling a bill of goods, not intentionally, of course, but still, they often showed miracle type cures, or else cures that came about by parents so devoted that no-one in the real world could ever copy their methods.  And I know, now, that some kids do change radically.  I'm not saying they don't change as a result of help from those around them, but other kids can get that same help and change much less, if at all.  You aren't going to grow a sunflower from a marigold seed, even if both get the same care.  And getting a marigold is great, not bad, but if you write a book about how you grew a sunflower from a tiny seed and anyone can do that, even those with marigold seeds...you are not quite getting it.

In those books I read about autism, I would often hear of moments like the one where Janey said what she said, and I'd think "There!  They did it!  Problem solved!"  Those of us who have now lived the life now that's not how it works.  Doing something once doesn't mean it will happen again right way, if at all.  I don't expect Janey to suddenly clearly state every feeling she has.  But it's wonderful to know she CAN.

After Janey told Tony she was angry, he did one of the twisted sentences we often do.  He said "What Daddy can do to make Janey feel less angry is....", leaving the sentence open for her ending.  We do that to sort of pre-populate a sentence, so she can fill it in.  And she did.  She said "say 'Achoo, A Sneaker, A Sandal, God Bless You"  That might not sound like it makes a lot of sense, but it does.  Janey lately loves to have us pretend to sneeze, and then to say "God bless you" to us.  And Tony often pretends to sneeze by saying "a shoe, a sneaker, a sandal..."  So, we played that game for a while.

A few days before Janey's big statement, her brothers were here working on their financial aide forms, and Janey was very upset.  I took her aside to calm her down and did some guessing, saying "Janey is angry because Daddy is busy" (he was helping the boys).  Janey repeated but changed what I said, saying "Janey is angry because William is busy"  And indeed, when I let William know she needed some attention, she was much happier.  We are realizing that often what she seems angry about is when we aren't paying her enough attention.  I think we usually used to guess she was angry about more physical things, like feeling hungry or tired or in pain, and it's so wonderful to better understand what she needs from us.

We'll keep on working on feelings.  I want to thank you, Janey, for giving us that great sentence to let us know how you feel.  Whenever you are ready to tell us anything, we will be here to listen.

Trying to give Freddy one fair afternoon

Lately, I've been thinking a lot about sibling issues and autism.  I think this has been triggered by the realization that next year, Freddy will be in college.  Of course, I saw this coming, but now that he's gotten some acceptances and some good financial aid, it's hitting me as reality.  And I've been thinking about how very often, Janey's needs come before those of her brothers.

Our family setup is such that it's often come fairly naturally to put Janey first, or it has seemed that way.  She's seven years younger than Freddy to the day (Freddy doesn't even get his own birthday!) and ten years younger than William.  She's the only girl.  So she's been set apart in the family, not just by autism but by relative age and sex.  And to be honest, I think sometimes the boys have half liked it that we couldn't focus on them as much as many parents.  Teenagers, although they do still very much need parents, sometimes like having a little more independence than some of their peers.  But so much hasn't been fair to them.  I know there are compensations, and I've read and agreed with so many articles and blog posts about the benefits to siblings of having a sister or brother with special needs.  However, I sometimes very, very much wish I could give them all the attention and resources they deserve.

Janey and Freddy

This afternoon, I decided on the spot that for once, I would put Freddy's needs first.  There wasn't anything special about today, except that every afternoon Freddy has left being in high school and living at home is special.  I wanted to let him be the sibling that got the attention.  Well, that wasn't easy.

The first test---Freddy and I decided to watch last night's episode of "The Voice" on Hulu.  A friend of his from school is on the show right now (go, Nathan!) and we knew he'd advanced, and we wanted to see his performance.  Janey had other ideas.  She kept trying to turn off the TV, succeeding a few times.  She whined non-stop..."I want Kipper!  I want Barney!  I want Olivia!"  mentioning every show she could think of, in hopes we'd give in.  And so many times---we do.  It becomes just not worth it to listen to her when we are trying to watch something.  But she actually likes The Voice, when she will watch it.  She likes dancing to the songs, she likes the singing.  And even if she didn't, I was determined to watch with Freddy.  We did see his friend's part, but after that, we both gradually drifted away.  It wasn't worth the fight to see the rest.

Next, I wanted to help Freddy pick classes to sit in on during a visit at a college he's been accepted at next month.  I love things like that.  I LIVE for things like that.  He got to list 3 choices from a long list of classes for both morning and afternoon.  I would have loved to sit there for hours, looking up the classes, discussing the options and just enjoying the whole process.  But again, Janey had other ideas.  After just a few minutes, she decided she wanted to go to the ice cream store.  I said no.  She repeated the request, with growing impatience, over and over and over.  I wasn't giving in.  Finally, she hit me in the face and bent my fingers back.  I felt close to tears at that point.  Couldn't she ever, EVER just for a little, short while, understand no and accept no?  And the answer is..no.  No matter how often I stand my ground and don't give in, it seems to make no difference.  Once she has an idea, a want, that is all that matters.  I did get through the choice process with Freddy, but in a hurried and not enjoyable way.

Tony came home after that, and took Janey for a ride for a while.  You might think---why didn't I just save everything with Freddy for that time?  If you are asking that, you probably haven't had teenagers.  You spend time with them when they are up for it, or not at all.  That's one of the reasons, but the other is that I just felt tired of always, always having to say "Wait until Daddy can watch Janey.  Wait until Janey is asleep"  Sometimes, I want Janey to be the one to wait.

Later, Freddy wanted to watch "Star Trek Voyager".  Tony was home, and usually, Janey will tolerate that show.  For part of the time, she did, but then she decided I needed to snuggle with her.  This is often how she gets to sleep, and almost always, I'll just lie down with her.  I almost did this time too, instinctively, but stopped myself and told her "I'll snuggle when the show is over"  Of course, she wasn't happy.   She just kept repeating,over and over and over "Want to snuggle?  Want to snuggle on Janey's bed?  Want to lie down?" I finally gave in when the show was in its resolving last few minutes.

So---what did I learn here?  I don't know.  I think I learned I often, very very often, give in to Janey, because she doesn't give up until you do, and because the consequences of not giving in are pretty grim at times.  I don't like being  hit, or having my fingers bent, or having someone scream in my ear, or being bit.  But when I don't give in, it never seems to work as it would with a typical kid.  Janey doesn't seem to get my reasons or accept them.  It seems, like so many things, to really make no difference what I do.  Janey does what Janey does.

My boys both are wonderful kids, and they both have told me, emphatically, that they don't feel I've shortchanged them.  But from a young age, they haven't known any other life.  I am resisting the urge to go silver lining finding here.  Autism takes a toll on siblings.  And childhood is short.  My boys are adults, or close to it.  I've tried to do my best, but they have often been shortchanged, and I won't sugarcoat that.