A trip to the library

As many of you who have joined the Facebook page "Rarer in Girls", which is a companion to this blog, already know (and as an aside, if you would like to join, you are welcome, if you'd like breaking Janey news but much more importantly, some great discussions with terrific people!), Janey did something very cool yesterday.  She found my pocketbook, took out my wallet and located my library card, which she brought to me and said "Want to go to the library?"  That was a surprise to me on many fronts.  She had never before expressed an interest in the library, but more, I had NO idea she knew what a library card was or what mine looked like.  I was truly stunned.  And happy---I love the library!  So I told her we would go after school today.

However, that plan got moved up in the day, due to Janey's bus never showing up.  This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus.  We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!)  And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again.  I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)

So---we went to the library around noon.  Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her.  It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.

After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room.  I kind of knew that Janey's picture of the library was not accurate.  I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun.  She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch.  But I figured we'd see what she thought.

Janey very briefly looked at the picture book section.  I told her she could pick out any books she wanted to take home, but she had no interest in that.  Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms.  When I saw that, I screamed "STOP!"  I didn't use a library voice.  Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code.  I felt like saying to them "I was once you.  I used only gentle tones.  I explained everything carefully to my children.  I would have sat down with you and made friends and arranged a playgroup.  However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms"  Instead I just said "She is autistic and a little unpredictable"  They all smiled an inclusive smile and we went on our way.

The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books.  She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf.  Then she went back to the picture book section and I again said she could pick a book.  Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist.  I hissed out "LET GO NOW" and she didn't, but I got out of the grip.  I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go!  We'll try again another time!"  The librarian was very sweet and offered Janey a sticker, which she took.  I checked out our books and we blew that joint as quickly as possible.

So...what's the lesson here?  Partly, that I probably should not have attempted the library alone with Janey.  She easily could have hit the baby or seriously hurt me.  But in a way, I'm still glad I did.  I need to get Janey out there, to have her be part of the community as much as I can.  It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.

The whole deal does illustrate why giving Janey a "normal" life is so hard.  There is so, so little I can do safely with her any more.  It is why inclusion, in so many meanings of the word, is challenged by a child like Janey.  And it's why parents like myself, and there are lots of us, so very much need help.

What it's like to visit a psychiatric hospital

Having Janey at Bradley Hospital, visiting her there, felt at first like something no other parent in the world has ever done.  However, when I thought about it more, I realized I can think of four other parents I know who have been in this situation, who have had children at psychiatric hospitals. Although I don't ever want anyone else I know to have to go through this, knowing that others have lived this somehow helped a little.  I won't tell their stories, what I know of them---they aren't mine to tell.  But I thought I'd describe what it's like to visit Janey in more detail, just in case any of you ever do have to live this.  You won't find this story in the cheery pages of parenting magazines.  The other mothers volunteering at the school or with their kids at the playground probably won't be chatting about this.  But it happens.

Driving to see Janey takes a varying amount of time, depending on traffic.  It's been as quick a drive as 50 minutes and as long a drive as two and a half hours.  During the drives, Tony and I listen to the radio, a classic rock station I don't know if I'll ever be able to listen to in the future, as it will feel forever associated with this time in my life.  But for now, it helps.  We can talk about the songs instead of our lives right now.  Often, Tony has worked all day before we drive, so I try to keep talking, to keep him alert.  But sometimes, there feels like there is little to say.  We cry now and then.

When we reach the hospital parking lot, every single time I get a strange feeling in my stomach.  It's a dread feeling, a scared feeling, a odd feeling I don't think I've ever felt in other situations.  I've felt dread and fear plenty of times, but this is different.  No matter how much I think I'm prepared for the visit, no matter how much I try to feel upbeat, it hits me.  I don't want to be here.  I want to see Janey, desperately, but I don't want to go in there.  It's not that it's not a nice place.  It's a beautiful place---clean, as friendly as it can be under the circumstances.  But I doubt anyone really wants to visit a psychiatric hospital.

When we park, I leave my pocketbook in the trunk.  You can take almost nothing in with you---no cameras, cell phones, watches, things like that.  I get my licence out.  We go into the waiting room and go to the desk, to tell them we are there.  We give Janey's name and our names, and show them our driver's licences.  We get visitor stickers.  Then we wait for someone to come get us.  The waiting room has lots of magazines and comfy chairs. But I hate being there.

After a few minutes, either someone comes from Janey's ward to get us, or one of the receptionists takes us to her ward.  To get there, three different doors need to be unlocked--that is why we always need to be escorted.  Outside the final door, there are lockers, and there Tony puts his car keys, switching them for the locker key, and we put anything else we might have that can't go into the ward.  Usually all we are carrying in is a bag of clean clothes for Janey.

When we get inside, we are in a big common room.  It's open and airy and nice, but it somehow doesn't seem like the kids spend much time there, at least when we visit.  We sign in there, and are taken to where Janey is, which usually is a smaller room near her bedroom.  There are two sections to the part of the hospital Janey is in, with a total maximum for both parts of 19 children.  Here's a link to more information, if you are interested.  The smaller room has tables and a television, and there are usually more adults working there than there are kids.

Janey generally spots us quickly, and looks happy to see us.  That's the best part of the visit---her smile when we get there.  My heart leaps every time I see her after being away.  Last night, we both felt she looked taller and older, even after seeing her just two days before.  It is so strange to see her there.  We take her into her room.  All the visits take place in her room, so we don't disturb the workings of the ward or the other kids.  The room has a bed, a table and a chair.  It has a closet which is usually locked, but which they unlock for us so I can get her laundry and put in her clean clothes.  There is a bathroom which is for her and a child on the other side of the bathroom.  Only one side is unlocked at once, so she has in essence a private bathroom.

Our visits are not as long as I wish.  We usually stay about a half hour to an hour.  We leave when Janey starts get restless, hopefully before she gets frantic.  We have not been able to spend time with her outside of one room for two and a half weeks now.  I think she is starting to see time with us as the boring time.  It gets hard to entertain her.  We play catch with her Care Bear, we sing songs, we tell her what is going on at home, we try to keep her engaged.  She asks for singing---last night she said "Christmas songs?" and started singing "We Three Kings of Orient Are" to prompt me.  She asks us for things we don't have there---cookies, bacon, chicken nuggets, fries, chips.  We never happen to bring the right things.  Eventually, she starts asking to take a walk.  We can't walk around with her there.  She starts to show signs of getting anxious, and eventually we reach the point where we know it's time to go.  We take her back out to the workers and say goodbye.  Sometimes she gets upset when we leave, and asks to go home with us.  Other times she seems relieved we are going.  I am not sure which is harder to take.

Usually, someone walks us out to the front desk, although a few times we've walked ourselves out.  We give back the visitor stickers  On the drive home, we analyze the visit.  We talk about how she seemed---calmer?  Happier?  We think about how things will be when she's home.  Then, we concentrate on getting home safely.  There's a part of the highway, near Pawtucket, which seems to be a center for cars chasing each other in some scary highway race, and we brace to drive through that.  Sometimes, we stop to get Freddy fast food on the way back, as we often don't have time for dinner before we leave.  We get home, exhausted.  We spend time with Freddy, the one child home right now, the child who is almost an adult.  We breath, and we get ready for the next visit.

Dream Alert!

The dream alert is for a certain friend of mine, who will remain nameless, who often reads my blog and doesn't like to hear dreams.  Okay, you know who, stop reading right now!  And for anyone else who might share her odd dislike of hearing other people's dreams, stop now too!  But blogs are nothing if not self-indulgent, so I'll go on and tell anyone who is still listening about the dream I had last night.

In the dream, Janey was attending some kind of early intervention.  She was younger than she is now, but not under 3, which is the age for real life EI.  The program was held on a sledding hill.  There was a place for parents in a little lodge above the hill, with lots of windows so you could look out and see your kids.  Some of the parents were on the slope with the kids and some were in the lodge room.  I got Janey suited up for sledding (in some high top sneakers, for some reason) and held her hand, ready to take her sledding with the parents that were with their kids.  Then one of the EI workers stopped me and said in a fake cheerful voice "I'll take Janey.  You just relax and sit there and talk with the mothers.  She'll do fine, won't she, Janey?" I knew she was saying this because she thought I was overprotective and that Janey would do better without me.  I didn't agree, but being the type that doesn't like to argue, I let her take Janey and went up to the lodge.  We all got talking and I was feeling pretty relaxed, when all of a sudden, Janey walks into the lodge.  She is holding a hack saw.  I grab the saw.  I'm filled with fury.  I ask the other mothers to watch Janey and run down to talk to the EI workers.  I scream at them "You thought I was so overprotective, but you don't understand Janey!   You can't take your eyes off her for a SECOND!  You weren't watching her! No-one saw she had a saw, no-one noticed she had left the hill and come up to the lodge, no-one was WATCHING HER!"  I was hysterical.  They talked to me in "calm this crazy lady down" voices, and I demanded to talk to the woman in charge.  She was really something---acting like I was being totally unreasonable and crazy and silly.  It never came up to ask why a hack saw was lying around where little kids were playing---you know how dreams are.  I wound up going back up, getting Janey, and telling all the other mothers how horrible the program was, and storming out.  The dream was dramatic enough that I was screaming out loud in my sleep---sleep talking being something I do a lot of.  Tony knew to ask me what upsetting dream I had when I woke up.

Dreams often don't mean much, but I'm trying anyway to figure this one out.  It isn't much like my real life----Janey is watched very well at school, and I have never once seen a hack saw lying around there.  And I don't scream like that at people.  I probably wouldn't even do that in the dream situation, although I'd be justified doing so, I think.  If this dream has a meaning, it might a reflection of my fears for the future, my fear of Janey some day being in a situation where she isn't understood and where what I know about her as a parent isn't acknowledged.  It might have been triggered by my reading of the "Far From the Tree" book, and hearing about how it can be hard for parents when their kids become adults, and where any kind of letting go and having a life outside of the child is fraught with danger for the child.  Maybe I was preparing myself for fights I might some day have to fight.  Who knows?  I woke up upset and shaky.  And glad that dreams, for now, are not reality.

An hour's worth of Janey thoughts

1. We are in the car, driving to a Barnes and Noble about 20 minutes away, to get a book for William. I put on my iPod to my big list of assorted songs, and Janey loves that. We have it down---if she likes a song, I repeat it until she stops asking. Today's repeats are "Leaving on a Jet Plane" and "Baby's Got Her Blue Jeans On". It strike me as it has many times that when we listen to music together in the car, we are both happy on the same level. There's no autism between us. We both love to hear what song comes on next, to enjoy a catchy tune. She's my dream music-listening friend.

2. At the Barnes and Noble. I've found William's book and we head to the kids' section, to see if there's a Yo Gabba Gabba book. There isn't, but Janey is happy there for a while. A little girl is dancing on the small stage there, and Janey gets up and dances with her. The girl looks happy, but her mother I think quickly sizes up that Janey isn't "right" and calls the girl away. Another mother is reading to her obviously very bright little toddler. As Janey makes her sounds and flaps her hands, she gathers the boy in tight and then leaves the area. I think how they are reacts to Janey like many of us react to being around someone obviously mentally ill. We are too polite to stare or comment, but we don't leave ourselves open to somehow be caught up in the scene. Although we know logically it's not catching, a part of us still acts like it is. It's very isolating. And I can't help but feel hurt.

3. A few minutes later. Janey runs from me, holding a train from the train table. I yell "JANEY! STOP!" but she doesn't. She runs across the store, luckily not out into the connected mall. She hits a dead end, and I catch her, we walk over to put the train back, and I lecture her and tell her we have to leave now because she ran away. She has her "wild" look on, and is laughing a lot. I think how she probably enjoys the few seconds of freedom, the once in a while being out there without holding a grown-up's hand. And how it can't happen. And what that all means.

4. The cashier smiles at Janey as we buy the book, and says "You look very happy today!" I think about how much little things like that mean to me now, how much I appreciate kind words and friendly smiles.

5. We are in the car home. I think "pretty successful trip", my mind editing out the running away, the parents acting protective, all that. The bar is fairly low for successful trips. I think then about my daydream daughter, the one I had mentally before Janey. We would have looked at all the books, talked about what she wanted to read next, bargained over how many she could buy, debated library vs. bookstore. In short, she would have been a little me. And of course, even if Janey wasn't Janey, that was just a dream. But then, as we listened to more music, I thought about how my daydream daughter and I had never listened to music with the intensity Janey does. I told myself I was getting all "Welcome to Holland", and I laughed out loud. And Janey laughed too.