What Community Means

What does it mean to be part of the community?

I got a list of summer camps today.  There were hundreds listed.  Janey would be welcomed at none of them.

When searching for after school activities in this area, a big urban area, there are almost none that would accept Janey.  One great exception, which is not close enough to home for us to utilize it, is the Boys and Girls Club.  I wish the one with the fantastic sounding programs was not about an hour's drive from us in afternoon or evening traffic.

A younger Janey and her brother William, in front of our house

The city is full of plays, stores, concerts, museums, restaurants, movies----almost none of which I could take Janey to.

There are lots of wide open spaces around here.  Might be great for Janey---if not for the dogs off leash that run up to her, with well meaning owners saying "Oh, he won't hurt her!  He loves kids!".  Yeah, but Janey is terrified of your dogs, and that makes her unable to use yet another public place.

So, sometimes when I think about including Janey in the community, I get discouraged.  Or I laugh a bitter laugh.

This would be much harder to take if it were not for the fact that in our own little neighborhood, we have found community.

Our neighbors on both sides are wonderful people, people that delight in Janey.  When Janey screams outside, or laughs manically, or just is her own unique self, it means the world to me that I know she is accepted and understood by those living closest to us.

Anyone who has read this blog knows about Janey's love for the "ice cream store", a store that is currently a 7-11, although it's changed names a lot.  We go there almost every day.  She is always welcomed by the staff, and increasingly, by the regular customers.  I can't tell you how many little kindnesses she has been shown there.

The closest few grocery stores know Janey well, and go out of their way to make our shopping with her not only possible, but fun.  One of the workers at the local Shaw's Supermarket has a grandson with autism, and has actually given Janey presents and always gives her a hug.

Janey's new bus aide lives in our neighborhood.  She walks over every morning to ride the bus with Janey, and her sweet, kind nature makes our mornings.

We have a little bubble here, a small world where Janey is truly included in the community.  We have often noticed that she is more accepted here even by people who don't know her than she is in many places.  Our neighborhood is working class.  It's never been gentrified, and probably never will be.  It's not a fancy place.  And perhaps that's part of the reason it's accepting.  People here are not necessarily living the American Dream, defined strictly.  There seems to be more room in their worldview for those who might not be following the script of "good schools, good college, good job, nice house, good vacations, comfortable retirement".

So what does community mean?  It means a place where you are included, where you are accepted and valued and allowed to be part of the action.  We might not have a community in the sense of formal things like camps or lessons or culture, but our neighborhood has made Janey a community member, and that means so very much to us.

I wish the whole world was open to Janey.  In an ideal world, it would be.  But for now, it's good to have our own little corner of reality where Janey is part of the community.

Treading Water

This week, and last week and I project this next week, feel like treading water, like running in place.  Janey and I are getting by, but not going forward, not doing much of anything useful or even that fun.  I feel like I'm somehow just not figuring something out, like I'm wasting time that shouldn't be wasted, but I'm not able to do what it takes to change things.

School starts a week from today.  I must say every year the first day of school feels like a holiday right up there with the big ones. I always liked the first day of school, no matter how I felt about the rest of the year.  It felt like the start of it all, the beginning of something new and big.  I remember how it felt to have my new 5 subject notebooks, each section carefully labeled, to have a clean desk and locker, to see who was in my classes and what new faces there were.  Within a few weeks, always, my desk or locker was a horrible mess, no matter how hard I tried, and the notebook was doodled on and torn up.  But the first day---it felt wide open.

Janey and Goofy, at ToysRUs

Janey will be starting 6th grade.  In a lot of ways, every school year feels the same with Janey.  But 6th grade---that's a big one.  That's middle school.  I have a memory so vivid it's like a movie clip of the first moment of 6th grade.  We moved to what in our town was called The Annex.  It was a school built in 1900, and by the time I went there, in 1976, it had been condemned for at least 10 years.  No-one could go on the 3rd floor at all, and only teachers could use the 2nd floor.  We were on the first floor, 3 classrooms.  There were 3 other classrooms you had to go down a hill outside to get to, a shop and a home ec room and a room called "the community room" which was a standalone classroom.  It was a small town, obviously.  But that moment I walked into The Annex for the first time felt like a huge deal.  Mr. Berry was there, one of the six teachers, and he was pointing and saying "That room for 6th grade, that room for 7th, that for 8th!" and it felt like the start of something getting close to adulthood.

I write about that moment partly to contrast it with Janey's life.  6th grade will be a lot like any other grade for her.  The years don't change much, in terms of what she is working on learning.  She'll go to school until she's 22, and then, probably I would guess to some day program.

Janey at the park, before loose dogs scared her away

I feel more and more like it's up to me to make Janey's life interesting and meaningful, and I feel like I'm not doing a good job.   And as much as I tend to take all blame on myself, I know in this case my job is very, very tough.  If Janey were a typical 12 year old, there would be literally thousands of programs, lessons, camps, enrichments---all open to her and all within the Boston area.  In addition, she would have friends.  She would perhaps be riding the subway to school on her own, if she were going to a school like Freddy did.  I would be part of her life, but it would not all be up to me.  When I think about it much, I can get furious.  Giving Janey a meaningful life is as important as it is to any child, but where in heck does all the money donated to autism organizations go?  Why is there basically NO programs Janey can access?  There are a few programs for autism here and there, but when I look into them, they are for the highest end of the spectrum---not for a child like Janey.

Janey finding the Elmo crayon toy, one she loves so much we've bought it twice

So---I do what I can.  It's not enough.  This week, we did a lot of walks to the corner store.  We went to a big open park, Millennium Park, early in the day so there weren't too many free roaming dogs or little kids.  We left when more dogs arrived.  We went to ToysRUs, and Janey enjoyed looking at toys (it's one of the few stores where touching the merchandise is not a problem) but then she got upset and started toward a little girl with a look I know as "about to lunge" and I grabbed her and left.  We watched TV and took showers.  It was not a week that was interesting and meaningful.

I will stop for now, as I feel like I'm entering the ranting and rambling stage of writing.  I'll stop and try to think of something to do today, try to figure out something that is safe for Janey and those around her, something interesting and meaningful.  Good luck to me.

It's all stored up there somewhere!

A week or so ago, Janey woke up saying "You want your Bruno dog?"  Translated, this means she wanted Bruno.  Bruno is her cousin Zeben's dog.  She last saw Bruno about 2 years ago.  When he was here, she paid almost no attention to him.  She wasn't scared of him---he's littler than our cats---but she wasn't interested in him at all.  I never heard her say his name, and I had no idea she ever knew it.  She hasn't talked about him in the past years, and we haven't talked about him more than in passing.  Yet somehow, his name was stored in her mind, and something made her suddenly want him.

I've realized more and more that almost everything Janey hears, sees or experiences is stored in her memory.  We might not known it, there might not be any way to readily get her to let us know she can access those memories, but it's all there.

Thinking of that, I've been thinking how important it is to keep giving Janey new experiences, new things to learn, even when it's hard doing so.  I'm thinking of my trip to Maine.  The sleep issues and the screaming made parts of it tough, but Janey experienced a whole, whole lot in a few days.  She got to spend extended time with her grandparents, she got to climb rocks and see alpacas and go to a fair and sleep in a travel trailer.  All that is in her head, somewhere.  It's not lost.  Some day, when I'm least expecting it, a bit of it will be spoken of by  her, or she'll do something that shows me she learned from all we did.

A few more examples I saw today----Janey saw two of our cats sleeping, and said "Tommy and Ash!"  She's said Tommy before, but none of us had any idea she knew Ash's name.  He's the shy cat, and she has never before referred to him.  Later, she was having a good loud scream.  I was using my most recent strategy, which is making sure she isn't hurting herself or in the position to hurt anyone else, and then just saying "I see you are screaming.  Tell Mama if I can help you" and then just waiting it out.  I don't think Janey likes that strategy much, but it seems to work as well as any.  However, today, she said "Want to go to the screaming bathroom?"  I wrote here---link---about the Screaming Room, another screaming strategy I'd tried in the past with Janey.  It involves going into the bathroom with her and staying there with her until she stops screaming.  I'd given up on in a few months ago, but I'm going to give it another try, if that is what she is asking for.  It was the first time I remember her asking for a specific way to help with her difficult behaviors.

One of the hardest things for me about autism is the lack of feedback from Janey.  It can feel sometimes for days like I am talking to myself, like I am trying so hard to help Janey and nothing is getting through in the slightest.  But that isn't true.  I need to remember that.  Janey is learning all the time, and I love the rare times she lets me know that.

Trapped

Readers of this blog have told me that they like it that I am honest.  I do always try to be honest, but I also try to not be constantly downbeat.  I've been wanting to write today, but resisting, as I feel like I've been too negative lately.  I tried hard to wait until I felt more positive to write, or to filter out the negative and write only about the positive---how Janey went to the respite house for 6 hours on Saturday and seemed to do fairly well, how there was slightly less crying this weekend, how today she got a good report from summertime school.  However, I'm going tonight to one of my reasons I wrote about recently for blogging---to be a sort of diary, to use when I am needing to write it all out.  So here goes---

I'm feeling incredibly trapped lately.  Not trapped in the way that I want out of my life, or marriage, or any of that.  Trapped literally in the house.  This trapped feeling comes from how incredibly hard it is to take Janey anyplace, at least on my own, and how her needs keep me from getting away for any significant time.  I am feeling like the walls are closing in, and a lot of factors are working together to make it near impossible to kick that feeling.

Part of it is it being summer.  I grew up in Maine, where summer is the glory of the year.  I even then wasn't a summer person, but I spent nearly all my time outside.  I walked in the woods, swam in the ocean, read in a cluster of tall grass, went on little trips to the beach or to get ice cream (which living on a peninsula meant usually a drive to Rockland, a good half hour to get there), walked to the candy store 3 miles away---I was on the go.  That is the kind of summer I wish my kids could have.  My boys do, in the urban way.  They are very good at using public transit, and they can get wherever they want by bus and train and subway, and they do.  But Janey?  Taking her anyplace is so tough.  Today after school, I wanted so much not to just go home.  But Janey has been in screaming mode, and thinking of a place to take her was an impossible task.  Sometimes she will tolerate the grocery store, but we didn't really need groceries, and quite frankly, that wasn't what I had in mind.  I considered a park or playground.  Playgrounds just don't work, as Janey is now considerably bigger than playground age, and with her noises and lack of ability to socialize, it turns into a starefest, and Janey doesn't enjoy herself anyway---not worth it.  Boston has a lot of nice parks.  The problem there is dogs.  A nice park attracts dog walkers, and Janey is terrified of dogs.  Quite a few times, I've tried a great park near us, and wound up just dealing with a screaming Janey or a paralyzed with fear Janey.  Most of the dog owners are nice enough, but many of them also ignore the leash laws and let their dogs runs free, and if a dog runs up to Janey, despite how many times the owner might tell us that Sparky wouldn't hurt a flea---Janey doesn't understand that.  Restaurants on my own with Janey---ha.  We don't do restaurants.  Stores---almost never good. And so we came home and for the hundredth time, went into the back yard.  Where Janey does fine for a bit, sometimes half an hour, but then she screams, or decides she wants her clothes off, and that is over.

Part of it is also the social isolation that autism brings.  When the boys were little, I often got together with friends and their kids.  The kids would play, the friend and I would talk.  It was great.  But Janey has no friends like that.  And I feel like I've gone from having friends that I could spend time with to having friends that I rarely see, because both the friends and I understand that a visit with Janey involved is not a visit.  It's a shared child care time.  Janey will destroy their house, find anything non-childproofed, scream, wet on their floor, grab food---I wouldn't have me over either.  I talk to friends on the phone, but the long leisurely get-togethers---they never happen.  I miss them.

And part of it, I need to admit, is me.  I don't feel up to the challenge of taking Janey places.  I am tired all the time, from her not sleeping.  I can't run fast enough to catch her if she got away.  I have a very hard time with the stares, and the stares always happen.  It is easier, at least physically, to mostly stay home.  But mentally, it takes a toll.

This afternoon, I felt I just couldn't stay home another minute.  I begged Freddy, who wasn't working, to go with us someplace, any place.  Freddy wanted to shop for shoes.  So off we went.  As soon as we got in the store, Janey started crying and screaming.  I tried hard to ignore it.  I walked her around, had her look at mirrors, talked to her.  But the screaming got louder and louder, and it was impossible for us to shop, to say nothing of anyone else in there.  We left within 5 minutes.  In the car, I opened up to Freddy more than I usually do about how discouraged I felt.  I try not to do that with the boys, ever.  They need as close to a normal life as they can get.  But I felt bad for him, not being able to do such a basic thing, I felt bad for Janey, being so tortured by whatever demons torture her that she couldn't tolerate a normal store and I felt bad for me.  I mostly, at that moment, felt very bad for me.  Which I'm not proud of.

I long to put Janey in the car and drive---drive to some faraway place.  My fantasies don't allow me to drive away on my own.  I can't do that.  But I wish I could take Janey and escape this house, this life, even for a day or two.  I wish the autism was something I could leave at home, not for good, because Janey's autism is part of her.  But for a few days.  I wish I could have just a little, little, little vacation from the autism, for Janey and for me.

The Storms and the Calm

Janey is having a rough night tonight.  Every half hour or so, she is screaming, that deafening scream that is fairly new, that is the alternative to the daylong crying it seems to have mostly replaced.  The crying was sad, but the screaming is angry, furious, and we are never sure why.

Much of the summer has been terrific so far.  Janey is talking better than ever, although we hold our breath about that, because her talking ebbs and flows.  But she is saying many more complete sentences---where she used to say something like "purple!" now she'll say "I want some purple ice cream, please!" or if I say "Maybe we'll go to the grocery store after school" she'll say "After school we might go to the store!" turning what I said around a little.  These kinds of sentences are still rare, but not shockingly rare any more, at least over the last month.  The other day, Tony said "We'll have to try to find Uncle Pino at the store" and Janey said "I know where she is!"  mixing up the pronoun, but delightfully responsive!  This morning, she looked around for William, who is in Maine for a few days, and said "Worms!  Where are you?" (Worms being a nickname I sometimes call William)  It was great, both that she noticed he was gone and that she verbally expressed that.

However, the storms come on suddenly and severely.  We can be having a perfectly good day, and suddenly, Janey screams, bites her arm and gets hysterical.  It's scary.  It was like what Mother Nature did yesterday as I was driving to pick up Janey at school---an amazing heavy rain came on and within minutes, the streets were flooded and I was fearing for my life.  An hour later, there was barely evidence anything had happened.  That's Janey.

I am working on figuring out a cause for these storms.  Sometimes, I have a good idea.  After school today, I took Janey into the library.  We have a usual routine there---we pick up the books I have held at the desk.  I order books online to come to my branch library, and Janey knows that routine.  This time, however, there was a book I wanted that I knew was in the stack there, so Janey and I walked into the dark and a tiny bit creepy stacks to get it.  She was okay at first, but when we got back to the desk to then get the held books, she lost it.  I had messed everything up.  She screamed her piercing scream, and I was glad that we were in a place we've been often before, so at least the workers, if not particularly sympathetic, at least knew Janey and had seen her in such action a few times before.  I did my patter, saying to Janey "We did something different, didn't we?  Mama should have told you ahead of time we were going to do that" and Janey screamed "Mama SHOULD HAVE TOLD YOU!"  I am not sure if that was echolalia or her true feelings, but I should have.  Other times, though, I have no idea what caused the storm.  I try to work like a detective, and sometimes do come up with a theory.  I've figured out any mention of dogs, even if the dogs aren't shown, sets her off.  She is truly terrified of them, and hearing a distant bark, one I might not even much notice, can be a problem.  Sometimes, though, even my best guesses and detection come up with nothing.  I figure Janey is thinking about or remembering something upsetting at those times, or has something stuck in her head, or has a pain someplace, or who knows what.

I feel like we are in a transitional period with Janey.  I am seeing her mature a lot this summer, but maturing doesn't necessarily being getting more mainstream.  It means she is becoming more aware of the world, and that might be a very tough thing for a girl that sees she doesn't quite fit in it, a girl with fears and thoughts and routines and ideas that are hard for her to express.  I think we are in for a lot of flash floods, hopefully often followed by the brightness of a world after the storm.

Dogs

Yesterday I took Janey to a farmer's market near us.  She has been cheerful the last week or so, and she was so at the market---walking around, looking at things, content as long as I kept moving.  William came along with us, and once we had looked at most everything, I wanted to go over to where he was and leave.  However, that became impossible, due to Janey's phobia of dogs.

I have no idea why Janey is scared of dogs.  She used to LOVE them, as a 2 year old, even though we are not really dog people.  She would seek out dogs wherever they were and no matter how big or scary looking the dog was, she'd go right over to it and show it some love.  Then her regression came, and for years, it was like animals didn't even exist.  She paid no attention to them one way or the other.  Finally, she started to give our cats a tiny bit of recognition, sometimes patting them a little or at least looking at them.  But around that same time, she started to fear dogs.  It's not the same as many of her other reactions when she sees a dog.  It's basically a freeze reaction.  She stops, becomes silent, and simply won't move another step closer to where the dog is.  That's what happened yesterday.  There were lots and lots of dogs at the market, on leases and well behaved, but Janey just wouldn't walk in a direction where she saw one.  For a little while, we got caught in the middle of a bunch of them, and we couldn't go anywhere.  Janey didn't cry, she didn't say anything, she just became like a statue.  When I tried to hold her hand and keep her moving, she just stood her ground.  I would have had to drag her, or pick her up, which now that she is 60 pounds, I really can't do.  So we just stood there until some of the dogs moved on.

I really don't know what to do about this dog phobia.  I try reassuring Janey, I try reading her books with dogs, I try to talk to her about them.  I don't really have any close by friends with dogs I can have her get used to.  My sister has dogs, but she's moved far away now.  For now, it's not really restricting her life much, but it makes us not able to go to parks much, and as she gets older, she might outgrow back yard playing and want to do more outside things.

Maybe the dog awareness is a good sign.  Janey is noticing what's around her more, and scanning for dogs all the time, which is more than she used to do.  And dogs are not like cats.  They can come on strong.  They are sociable.  Cats don't tend to care if you pay them any attention or not, but dogs want you to interact with them.  That might be why dogs can be good therapy for autism.  When Janey first regressed, I read a lot about therapy dogs, which I found out were for kids over 6 with autism.  For a while, I kind of planned to look into getting one for Janey when she reached that age, but 6 is right when her phobia started.

Does anyone out there have experience with autistic kids and dogs?  I'd love some ideas on how to work on this phobia, or insight into whether it's worth it to work on it at all.

Janey and the dogs

My sister had a copy of the picture I'd been looking for, showing Janey with 4 big dogs. We were at my cousin's house in Washington, during our big trip, and the whole trip, Janey was deeply in love with dogs. My aunt had a wonderful old Rhodesian Ridgeback, Gidget, and Janey loved her so much. It's part of why it's so perplexing to me that she has such a horrible phobia of dogs now.

Thinking about the dogs on that trip always makes me think about how the trip affected Janey. We drove cross country to Olympia, Washington. 6 days out and 6 days back, 9 days there. It was a wonderful trip, a dream come true for me. The boys and Tony loved it too. And mostly, at the time, Janey seemed to enjoy it. She turned 3 during the trip. Now, looking back, we date her autism starting to the trip. Before we left, I have to say she was showing a few small signs, and I was first starting to have questions. She started preschool a week or so after we got back, and within a few weeks, her talking pretty much ended. I always wonder if there could have been a connection. She spent long hours in her carseat, but she was next to Freddy, and we are talkers---there was certainly almost no time that she wasn't surrounded by conversation. But could she have gotten a blood clot from all the sitting? She wasn't sick on the trip, I don't remember any day during it she acted radically different, but in a way, the non-autistic Janey left us somewhere around the time of that trip.

I resist thinking about Janey before the autism. I try to convince myself often she really wasn't okay, even then. But then I think about how she was in Early Intervention all those 3 years, because of her severe physical delays, and no-one once suspected autism, and those were professionals trained to see it. I remember the last time the PT saw her, and Janey was totally discharged from EI. We laughed about how at least we knew she didn't have speech issues. It breaks my heart to think of that, sometimes. We have videos of Janey talking. I watched part of one, once. I suddenly screamed during it, a scream that I didn't even recognize as myself. I turned it off and told Tony I never wanted to see it again.

This is why although I don't think vaccines caused Janey's autism in any way (she had none anywhere near the time of her regression), I can understand very well how people that believe that did cause their children's autism feel. If she HAD had a vaccine at that time, it would be very hard not to associate it with the horrible regression.

I do think Janey always had the seeds of autism. She talked, she was social, but when I am really thinking about it, she was always a little bit something hard to define. She talked more to me than to anyone else, and there were friends of mine who had rarely heard her talk. I remember thinking when she was 2 or so that her words were like bubbles---beautiful and perfect, but when she wasn't talking, it was hard to picture that she could. But it was nothing like afterward, or like now.

So, like the Janey that loved dogs, that Janey isn't here any more. We have a Janey, and I thank everything there is to thank for that. I do miss my other Janey sometimes, though.

Detective Work and Phobias

Life with Janey involves a lot of detective work. She doesn't give us a lot of clues about why she is feeling the way she feels, or why she does the things she does. She was in a wonderful mood for several weeks, and then Monday she fell part. She falls apart spectacularly, with a day full of screaming and tantrums. I've got a couple theories about why. It was Columbus Day, and there was no school. I think she has a counter in her head, although she doesn't seem to consciously get numbers, but I think she knew it was Day Three of the weekend, and that was just plain wrong. She was supposed to be in school, and she wasn't. I also took her to Kohls to shop for clothes. That is something I have almost never done. I'm not a shopper, and if I do shop, I don't bring her along, but this particular time, the circumstances fell together and I had to. She didn't enjoy it, to say the least. She made her half crying-half laughing sound the whole time we were in the store, she got on the floor several times for screaming fits, she put on her extremely angry face a few times and yelled---it was pure joy, let me tell you. Nothing as fun as lots of people staring at you. I always want to say "Have you NEVER seen a kid with autism or retardation before? There's lots of them out there, you know! Sorry I had to expose you to such horror!" Of course, that's just mean, because most of the people are not trying to be rude, but I wish they'd smile at me, or look away more quickly, or something.

After searching for reasons for the Monday Meltdown, we moved on to Tuesday, with school, and a happy Janey. After school, I took her for ice cream, and while we were walking down the street, all of a sudden she stopped short and curled up in almost a fetal position. I thought she had hurt herself somehow, but then realized the problem was a dog being walked toward us. Tony had mentioned she is scared of dogs now, but it was the first time I'd seen the extent of it. She was TERRIFIED. Terrified to the point she couldn't even cry---she was barely breathing. I talked reassuringly as much as I could "That's a nice doggie. It's not going to hurt us. It's on a leash. It's a sweet doggie!" (which it did seem like). But she didn't relax until the dog was past us. We saw two more dogs on the short walk back and forth to the shop, and both times, the reaction was the same---absolutely frozen terror. I don't know where she got that. She used to LOVE dogs, to an amazing extent. I tried this morning to find a picture I have of her surrounded by four Rhodesian Ridgebacks, which are HUGE dogs, extremely happy just to be with them, when she had just turned 3. I wonder if it's a good sign, almost---her awareness of what's around her is growing, and she is noticing dogs. That might be another piece of evidence to look for when she is upset----a dog outside barking? A dog on TV? Even a dog just mentioned?

I'll say this---Janey keeps my mind active. You can't coast as her mother. You have to be on alert always, figuring her out. I don't think I'll ever get her completely, but I have to keep trying.