"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.

Another sleepless night, through various filters...

The facts---Janey again had a sleepless night.  She was up from 11 pm to 5 am.  I'm a little slaphappy.  Here's a few takes on the night....

The completely supportive of my autistic daughter take---

Janey is communicating to me that she has decided to be nocturnal.  I celebrate and support her in this choice!  We will rearrange our schedules to accommodate her.  Tony will probably have to quit his job, and I'll sleep all day and stay up all night.  She also has indicated by putting on her shoes in the night and trying to unlock the doors to outside that she wants to go someplace during her wakeful nights.  We will put all our resources into figuring out where it is she desires to go, and will of course take her there.  It's wonderful to have her communicating all this to us!

The completely self-centered mother take---

I can't take this much longer!  Why is Janey doing this to me?  Why am I being tortured?  I have to find a way to make her sleep so I don't have to go through this any more!  And now, I can't even close my eyes for a second as she is constantly trying to "elope" out the door?  What fresh hell is this?

The scientific approach---

I am going to analyze the last few days and attempt to form a theory of Janey's sleeplessness.  Is she consuming something with caffeine?  Has her evening routine been disrupted?  Could she be experiencing pre-puberty hormonal changes?  I will try changing a few variables and observe the results.  With careful work, we should have this figured in a year or two.

The sleep-addled mind approach---

Wahhh?  Awake again?  Janey, please go back to sleep.  We aren't eating right now.  What?  What's going on?  Janey, take off your shoes.  Stop trying to open the door.  Tony, why don't you go upstairs to sleep so only one of us has to stay awake.  (3 hours later)  William, please wake up and go get your father.  I can't stay awake any longer and I can't leave Janey for a second.  Oh, hi, Tony.  Thanks for taking over....It's a big...zzzzzzzzzzzzzzzzzz.

The tough love approach---

Janey, you are going to get in that bed right now and close your eyes and sleep.  I'm not putting up with any more of this foolishness.  You aren't eating anything, you aren't watching videos, you aren't listening to any music.  You are SLEEPING!  Don't you dare get off that bed!  Don't you dare try to open that door!  You get back in bed!  (inner despair on realizing that Janey could care less if I sound angry and firm, because she doesn't care about pleasing me and knows there really isn't any punishment that works for her, then tiredness takes over and I go right back to the non-working rant)  You darn well better listen to me, young lady!

The hybrid approach---

Take a little of each above.  Mix them together in random form.  Hope against hope something works.  Realize nothing is working.  Wish that there was some magical new way to handle this.  Realize there isn't.  Spend the day in a half-awake daze.  Have hope tonight will be better, as hope springs eternal.

Other blogs

Today has been a tough day for me, for no external reason except being tired, which is my normal state, pretty much. I'm just feeling it all more than usual. For some reason, I started searching around for other autism blogs. I figured there must be some other ones out there that I could read that reminded me of myself and of Janey---misery loves company, I guess. But I couldn't find any. There are millions of autism blogs, it seems, and I KNOW there are a few other mothers with kids like Janey (and I am thankful every day for knowing that!) but the blogs were...well...let's do a list!

1. They were fancy. They had great graphics, and all kinds of pictures, and little statistics at the side, and awards, and animations and neat wallpaper and all kinds of do-dads. I am not good at decorating in real life, and I guess my blog reflects that.

2. They were upbeat. Not every post, but in general, they were cheery. They were forward looking, seeing great improvements all the time, excited about new approaches, thrilled about achievements, just so happy sounding. Maybe I am just a down person, although I have not usually been seen as such. But it seems like bloggers are supposed to be a lot more positive than I am.

3. They weren't afraid to speak well of themselves. I saw more than a few that had mothers that referred to themselves as "Super-Autism Moms!" That amazed me. I guess my Maine upbringing featured many reminders that you don't "show off" like that. If anything, you should always put yourself down a little, and it will be understood that you are doing that. But I guess that's not the way it's done in Bloggerville.

4. They had unified plans for the "battle against autism". They most all seemed to have picked a plan the day their child was diagnosed, and they work relenetlessly to put that plan in place. Whether it's ABA, or diets, or chelation, or intensive floortime, or whatever, they are wholeheartedly devoted to the single-minded goal of FIXING THAT CHILD! I felt like a huge slacker and a pacifist in the battle against autism.

5. Their kids were incredibly bright. So many blogs mentioned that---how their child at 2 could read, name all the presidents and elements and states, build rockets---you know I'm overstating here, but you get the picture. Their child was autistic, but not, you know, that BAD kind of autistic that is also retarded. Not that kind, but the so much more trendy high-functioning kind.

6. Schools, doctors, Early Intervention, society at large---they were all enemies, trying to do what they could to somehow deny their special child the help they needed. This wasn't universal, but it was out there a lot. It was them (their own family and others who agreed with whatever their "recovery" approach was) against the world. I love Janey's school, which is probably not the thing to do if I want to be one of those cool autism moms.

7. They DID things---things outside the house, things besides just getting through the days with their children. They went on getaway vacations, dinners out, fundraising events, conferences, opportunities to take great scrapbooking pictures, all kinds of things. They somehow didn't seem tied to the house by the drain on emotions and finances that I thought came along with this journey to Holland.

8. They were just in general a lot cooler than I was. They were the popular crowd, the insiders, the ones that have it all together. Autism has entered their life, but as luck would have it, right when autism is very cool!

I hope anyone reading this list sees that it's a bit satire-ridden. Of course all the blogs weren't totally like that---it's just how it felt to me on a down, depressed day. I know there are many, many, many people out there living a life like mine. They probably just don't have the energy to get to the keyboard. I've always written---writing is my break, my release, so that's how I use the limited store of energy I have. Others with lives like mine might cook, or sew, or watch TV, or just lie on the bed and stare at the ceiling. And they have every right to. Writing is how I survive, some days. So if you are reading, thanks, and please don't take me too seriously when I'm in this kind of mood!