The count of five is the best

The last few weeks have been busy.  We went to get Freddy at college, and then the next weekend was one of our biggest events ever as a family, William's graduation from Brandeis!  If I might boast just a bit---he graduated summa cum laude and gave the featured speech at his history major diploma ceremony.  It was a day for the lifelong mental scrapbook.

This past week, I've been thinking over and over how my favorite times are when the count in the household is five---when all three kids are around.  It's crowded, it's loud, it's food consuming and endless dishes and lots of arguments and loud music, and it's fantastic.  It's wonderful.  Being a mother to three very different and very cool kids (or two adults and a kid, now!) is my dream come true.

I've also been reflecting, though, on how autism affects the family count, the family unity.  I'll say the right things and mean them---I think we are all better off than we would be without Janey.  I think she gives our life the salt, the spice, that makes it more than it would be otherwise.  I am pretty sure her brothers and Tony would agree.

However, it also makes it very hard to be a family of five anyplace but at home.  We were very lucky for the graduation weekend.  My parents came down and watched Janey during the morning graduation, so Tony and I could go with Freddy.  When we picked up William and drove him to the ceremony, we all noted how odd it felt to have the four of us in the car.  It's the combination that just about never happens.  Someone is always at home with Janey, or if she is with us, usually the boys aren't.  But we were able to attend, and that was great.  My friend Maryellen was even there as a backup, if something had gone wrong with the arrangements.  But I wish...I wish Janey could have been there too.  And of course she COULD have, but in many real ways, she couldn't have.  She would not have stood two minutes of ceremony.  No-one around us could have listened to the speeches.  One of us would have had to leave, to take her outside.  And the focus would not have been on who deserved it at that moment, William.

For a rare event like a graduation, I accept that we will rarely number five.  But I wish that we could do more as a whole family for the more minor events---a dinner out, a visit to friends, a movie or outdoor concert or trip to the beach.  A lot of why we don't has nothing to do with Janey, and much to do with the big age divide in our family.  The boys are no longer at home most of the time, and when they are, they are often working or with friends, and that is how it should be.  But even when they are around, the simple fact is that very few places are possible to go to with Janey.  Or they are possible if one of us is primarily a caregiver, and ready to leave at any moment.  It's nobody's fault.  It's just the way it is.

Tony, William, Tony's sister Rose and Freddy

And so I treasure the times at home when we are all together.  I treasure them more than I can even explain.  Yesterday morning, Freddy came down for breakfast (more like lunch, as he works late).  The rest of us were eating and talking.  Janey ran over to Freddy and said "It's Freddy G-mara!" (a jokey way we say our last name sometimes)  We all laughed and laughed.  Then I said "It's great to have you here with both your brothers, Janey" and she said "My brothers!  William and Janey and Freddy!"  I started tearing up.  I felt like at that moment, she was grasping something she never quite has before---that she is one of three kids, one of Tony and Suzanne's children, one of the Amaras.  That is what I want for her more than anything on earth---to be part of it all, to be an equal and included member of the group.

I'm going to hold onto the moments this summer we are all together.  William heads to Chicago to graduate school in the fall.  Some day, both boys will perhaps have their own families.  Maybe, if we are lucky, we will have grandchildren.  But the moments we all five at home---those are the moments that make me wish I could save time in a bottle.

The best weekend ever

The title says it all.  This past weekend with Janey was the best one we've ever had with her.

Janey, all weekend long, was happy.  Not manic happy, but very, very happy in a contented, sweet way.  There was not a single moment of tears or screaming.  She was smiling pretty much all the time.  It was amazing, truly amazing.  I would have given anything to be able to see this weekend during some of our darkest times.

We were able to do things that we are never able to do.  We took Janey to a new food place, Wahlburgers, and got takeout, which took a little while, and then ate it outside in the city.  I felt like I was living someone else's life.  We went to Savers, and Tony was prepared to take Janey out, for a ride or walk or whatever to keep her happy.  Instead, she was happy AT the Savers.  For 90 minutes.  Happy looking around, laughing, talking....amazing.  We sat back on Sunday night and watched two hours of old Family Feud episodes.  Janey watched with us, or played with her iPad, all in perfect contentment.  She slept well, she ate well....she was beyond a delight.

And of course, I want to figure it out.  What was different?  How can I capture what happened and repeat it?

I have a few theories.  I think she's very, very happy at school this year, and that translates to happy at home.  I wonder if she has pain of some sort a lot of the time, and it was gone for the weekend.  It was the first cool weekend of fall, and perhaps she loves fall and hates the heat, like me.  Tony and I had little else going on, and gave her a lot of attention.  We were both happy, after a long week, and she picks up on emotions tremendously.  Who knows?  I almost hate to write about the weekend, for fear of the jinx, but I had to.

There were lots of times when I thought it would never be like this.  There were weeks and months and even years where it was so hard I honestly sometimes felt I couldn't go on.  And however hard it was for me, I know it was so much harder for Janey.  No-one should ever be unhappy as much as she was.  I have so much joy when I see her happy.  It makes me realize that is all that matters with her.  The autism makes no difference.  The intellectual disability makes no difference.  It's her happiness that makes the difference.

I will try not to over-analyze.  I just wanted to record this weekend before it slipped into the vast territory of past time.  I wanted to have a record of how it can be.  And I wanted to thank Janey, and tell her I hope with all my heart that happiness like she has had lately can be the default state for the rest of her life.

Hopeful visit to an autism clinic

Today we had our visit to the Lurie Center, an autism center connected to Massachusetts General Hospital.  We had been waiting a long time for this appointment.  A lot of people had recommended this center to us back when Janey had her crisis in November, and I contacted them then.  To get the appointment, I had to fill out a lot of form, wait for them to be processed, and then I got a call to set a time, which was far in the future---but the future finally arrived!

Cheery Janey before the appointment

I was trying not to get my hopes up much for this appointment.  We've had several other such clinic visits at different places, and they have been mostly letdowns.  I didn't want to pin a lot of hopes on this one, but I must say I'm feeling good about it, and quite hopeful in a lot of ways.

The appointment mostly consisted of me talking to a psychiatrist specialist in autism.  Tony came along, and Janey was in and out of the room, as her patience for sitting around during long talks is limited.  I knew as soon as I started talking to the psychiatrist that she seemed to truly understand and ask the right questions about Janey.  In analyzing what was different in my head, I realized that it seemed like she had a lot of experience dealing with children like Janey---children on the lower end of the autistic spectrum, the children that wind up in hospitals and in psychiatric wards.  That was strangely comforting.  Often, even in the world of autism, I feel like an outsider.  I don't need peppy "resources" about camps Janey never could attend or ideas for games or books she could never read or play.  I need practical advice and help, and I felt like I got it there.

First, we got a prescription for a new medication.  This one will eventually replace the Risperidone that Janey has been taking for a long time.  The psychiatrist was very, very familiar with the various medications for kids like Janey.  We were pleased to hear her say that the psychiatrist Janey has seen up to this point has done quite a decent job with her medication so far.  However, he is a more mainstream guy, who I believe sees mostly kids with things like school anxiety.  Today's psychiatrist knows more about kids with severe mood swing, aggressive behaviors and self-injury, and we are hopeful about the new medication.  We did have a scare when our pharmacy said our co-pay would be $150 a month (for 30 pills!)  But we reminded them she has the supplemental state insurance, and for the first time, that worked well for us, and we didn't have to pay at all.  Out of pocket, the cost would have been $1124!  We joked that we certainly hope they are miracle pills.

Next, we talked about how we can get more help for Janey, and what we will do if she has another crisis.  The psychiatrist finally convinced me to consider in-home help.  I have been resistant to it, for many reasons---it is not respite, but rather someone working with Janey AND us, I am not terribly into having strangers come into my house, I don't feel like it would be helpful for our family, and a bit of "I don't need someone telling me how handle Janey".  But at this point, we are ready for any help we can get, and what most convinced me is that she told us it's the first step to getting almost any other kinds of respite style help.  So...okay.  We'll talk to someone about it.

If Janey has another crisis, we will take her to Mass General.  The psychiatrist said everyone in the ER there is trained to deal with autism, and she herself has connections to Bradley Hospital, where Janey went before.  She said it's possible that if Janey truly needs help quickly, she might even be able to get her directly admitted to Bradley.  I think that is what most made me feel a burden had been lifted from me.  I think I've been living in fear of Janey having another hospitalization, and of feeling completely alone in that, like it would be the end of the world.  The way this woman talked so matter-of-factly about it melted a frozen place in me.  She said it like it would be something we could deal with, something that is not shocking or horrible or unspeakable.  She said it like she expects it to happen at some point.  It's strange that would feel so freeing to me.  But I think I've been trying for a long, long time to fit Janey into a mold that doesn't fit her.  She is NOT mildly affected by her autism. Today I somehow felt for one of the first times that she is not one of a kind, that there are actually protocols in place for kids like her.  I'm not sure I'm explaining this as well as I can, but having a plan for what might happen makes it not feel like the world's worth thing.

Janey and William at Noodles and Company, eating out!

We will take Janey to her first follow-up appointment at the center in a few months, and in December we will see a geneticist, something I have long wanted to do.

The rest of the day was very nice.  We did a lunch out at an upscale fast food place, along with William, and Janey was quite good.  Then she went for a long ride with Tony and William to a guitar store.  She was cheerful almost all day.  And I am feeling better than I have in a while, feeling like there is a place, there are people, there are systems set up for kids like Janey.  I've always know there were others like her, thanks to all of you, but this is one of the first times I've truly felt there are others outside the world of us hardcore insiders who really get what we live, and that is a good feeling.

A thankfully rare memory of rude people!

Janey's brother Freddy has been attending an after-school support group for siblings of children with special needs, run by a fellow student.  I am so happy he's getting a chance to talk with other kids who truly understand what life is like for families like ours.  The leader of the group asked him to write about a memory that stood out from his childhood involving Janey.  He wrote about a time I remember vividly.  Here's what he wrote...

Going out to public places has always been one of the most difficult things to do with my younger sister. When she was around 6 and I was 13, we went to a fast food place simply because my sister doesn't do well with long waits. My sister was just being herself, quoting the TV shows she likes, repeating nursery rhymes, and occasionally joyful outbursts. She wasn't bothering anyone, or so we thought. At the table next to us, there was a family of people from another part of the country with two children, a boy and a girl, under 10. I'll never forget the way they looked at my sister. They stared at her and exchanged whispers, as if she were some sort of alien. Instantly, I felt extreme hatred towards them. Jane is my sister, how dare they even look at her like that. Of course, they may have just never seen an autistic child before, and they were "interested" or something, but I couldn't take it. I had to get us out of there, because I couldn't take another minute of their stares. When we got into the car, my brother and mother felt the exact same way I did. We had just as much right to eat at that place as they did, and they were staring at us like our hair was on fire.
Don't get me wrong, this didn't stop us from eating out. Luckily, most people in Boston are quite tolerant of special needs children, but I have no tolerance for those who don't.

 I remember so much about that awful meal.  The family was talking loudly at first, before they noticed Janey, and we heard all about how they were vacationing here.  Janey was being so good, I was thinking at the time.  She was sitting nicely, eating, and talking away.  We loved then and love now when she gets into one of her fairly rare talkative moods.  As Freddy said, she was quoting all kinds of shows, singing a bit and perhaps now and then making a happy noise.  The family suddenly got very quiet.  They all started staring at Janey.  This wasn't any subtle stare.  It was an all-out stare, like, as Freddy said, they were watching an alien being.  Then they started the whispering---taking a look at her, whispering to each other and then taking another long look.

What upset me most was that the adults (what looked like a mother and grandmother) were fully involved in this staring and whispering, just as much so if not more so than the kids.  I remembering hoping against hope that the boys were not noticing what was going on.  However, before we finished eating, they both asked to go.  I was happy to.  We gathered up our food and went to the car, Janey happily holding our hands.  For once, I was very glad she was oblivious to all that was going on.

In the car, both boys burst out in anger.  They were furious at the family.  And I found myself completely unable to disagree.

What strikes me is how unusual this scene was.  I've had people say something nasty to me about Janey maybe three times ever.  I've had people notice her and look sad somehow.  I've had people ignore her.  But I don't really think I can ever, ever think of another incident of people staring and whispering.  And that is good.  Maybe Freddy is onto something.  Maybe the greater Boston area is a good place to have a child like Janey.  Bostonians are fairly tolerant.  They are also generally not whisperers, I'd say!  If they have something to say, they say it.  Maybe this family felt it was more polite to stare and whisper than to smile at us, to let us know that they saw Janey was unusual and to talk to us about it.

I'm thinking in contrast of something that happened this weekend.  Tony and I were at a Dunkin Donuts with Janey, and she ran away from us and went to a table where a man and woman were sitting.  She reached for the woman's doughnut just as Tony grabbed her and stopped her.  The woman gave us a big smile as Tony said he was sorry.  She asked Janey her name, and Tony said Janey was autistic and wasn't much of a talker, and asked Janey to say her name, which she did.  Later, when taking Janey to the bathroom, we passed them again, and they smiled and waved to Janey.  That was a case where the people obviously realized Janey had special needs, but they acted in such a way that we left feeling happy and included.  It takes so little to do that, and I must say, most people are great in that way.

Memory is funny.  I am not sure why Freddy and I, and William too, so vividly remember that awful family.  I wish memory saved instead the many, many times people have been kind to Janey, have delighted with us in her uniqueness.  They are the people I want to have occupying my memory.

How Little Closed Doors Add Up

A while ago, I read this article about an IKEA playground---how a mother wasn't allowed to go in to the playground with her autistic 9 year old, so he wasn't able to play there.  My reaction at first was "Well, that's not much of a big deal.  That's their rules"  Then I got thinking about it, more and more, over the last few weeks.  Although that particular incident might not be a big deal, little closed doors like that one add up.  They add up into a world where so many, many places are closed to Janey and others like her.

Most of these closed doors are not formally forbidden to Janey, of course.  They are public places that legally, she's free to go.  However, because of her behavior and because I don't want to intrude on other people and their rights to use public places, I just can't take Janey to them.  For example, after our trip to the library, I realized that it was not a place for Janey, especially not with small children around.  Trips to playgrounds or to splash parks are not really possible, because Janey is bigger than most of the kids there and prone to lashing out at the little ones.  Restaurants are out of the question, for the most part.  I would not ever attempt a plane, or a longer train or bus ride, because Janey would scream at many points during the ride.  Church doesn't work---others can't quietly worship with a screamer in their midst, and Sunday schools or childcare aren't staffed by those able to handle Janey.  We can't go to movies or plays or concerts, because others pay to be there and it's not fair if they can't hear what they paid to hear.  If you start to think about this list, there are very few places we can take Janey.

I don't like the above list, but I can understand it.  I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!)  Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.

What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs.  I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children.  The program had a 1 to 4 ratio of caregivers to children.  That made it, in essence, closed to Janey.  She needs a 1 on 1 ratio.  The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.

A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital.  When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room.  Right down the hall, there was a room chock filled with toys, books, games and the like.  We were not allowed in that room.  It was for the SICK children, the PHYSICALLY sick children, not the children like Janey.  I even offered to take her there in the middle of the night, when other children would not be there.  I would never, ever have gone there and put a little sick toddler in jeopardy.  I only wanted Janey to be able to play there if no-one else was there.  But that was not permitted.

Janey's old school, the inclusion school, was in so many ways a dream school.  It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room.  It was filled with people that had known Janey since she was born.  I loved her school.  And then---it too was closed to her.  I understand the reasons---I understand the reasons for everything I've written about here.  But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.

What can be done?  I'm dreaming here.  In many ways, maybe nothing can be done.  Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is.  However, I will dream.  I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families.  If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on.  Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go.  My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided.  And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.

Life isn't fair.  That old chestnut mothers tell their children is very true.  Everyone has closed doors, and I accept that.  But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle.  There are no easy answers to this problem.

The Heights and the Depths

Yesterday was a great example of one of the most exhausting and mysterious things about how autism shows itself in Janey.  It was a day that was a mix of her worst and best, see-sawing back and forth all day until we were left exhausted, unsure whether to laugh or cry, despair or rejoice.

Let's do a run-down.  Janey woke up in a bad mood.  She woke up screaming and screaming, for no reason we could figure.  It took about an hour to calm her down, during which she kept attempting to bite her arm.  Once she finally relaxed, we had a good hour of hanging out, eating breakfast and watching some shows.  Then we all headed out to my favorite thrift store and various other errands.  Janey got into a mood in the car for a while, crying and crying.  We were pretty much figuring the day was going to be a disaster.  She wasn't happy at the thrift store, so Tony and Freddy took her for a walk while I shopped.  She got cheerful enough during this walk that we decided to go to a hot dog place near the store.  It's slow fast food---you order, and it takes a while to get brought to you.  As it was early in their day, this time it took quite a while, maybe 20 minutes, and Janey was a joy.  She sat there patiently and happily, listening to the radio, looking out the window, as good as you could hope anyone would be.  She didn't eat much, but we all had a very nice meal.  Then we went to Trader Joe's and a computer store near there.  Janey did not care for the computer store Tony took her in while I grocery shopped.  She didn't care for it so much she freaked out and tried to bite Tony on the face.  Freddy took her out and brought her to the crowded Trader Joe's with me.  The crowds bothered her not a bit, and she walked around with him fairly happily, looking for her "ham", the fancy salami she likes there.  We ate it on the way home, a good drive.  Once home, she again had a lot of fits, crying, tossing things around, furious at us.  I finally toward evening in desperation gave her my iPod to hold and put it on Bluetooth with some speakers I have.  She caught on right away that she could wander the house, changing music as she pleased, and for probably 2 hours, she was happier than happy.  She played some of her favorite songs over and over, including maybe 10 go-throughs of a current favorite, Funkytown.  She and Freddy danced, Janey doing the instinctive right moves as she so often does.  She looked like she was in a disco.  Later I played her the chorus from The Messiah.  That was the highlight of the day or most any day.  She stopped moving and stood listening with a look on her face that was beyond words, a quiet joy and amazement.  She's heard the piece before, but not for a while, and it was simply one of the best moments I've ever had to watch her experience it.  I don't think anyone could love music more than Janey, whether they are the most experienced and knowledgable musician on earth.  After the music time, Janey fussed her way to sleep, demanding this and then that and finally falling asleep very, very late for her, about 11 pm.

So we go in one day from scenes like a lunging biting attempt in a store, a prolonged screaming and crying fit in the car, several tantrums, but also a near perfect meal out and a glorious time with music.  How is it all explained?  What drives Janey?  What happens?  I could think we shouldn't have taken her to as many places as we did, but it wasn't that straightforward---she was better for the ride home than the ride out.  I could say we should have insisted on an earlier bedtime, but it's the weekend, she almost never stays up late, and the hours with the music were among the best we've ever had with her.  We could say we should have given the day more of a routine, but some of the toughest parts were the parts where everything was calm.  When I think I've got some aspect of Janey's moods figured out, she proves me wrong.  I don't understand her.  I don't know if I ever will.  She is intense, driven, angry, angelic, mysterious, sad, joyful---she is not an easy girl to understand.  Tony and I have joked about our three very different but all unusual kids, wishing that we had had just one boring child.  That's not the path we've been given  We are doing the best we can, Janey.  I hope someday, if you can read this, you'll forgive us for the times we were overwhelmed by you.  You are an amazing girl.  I hope we can help you find your way.

Routines...Once again, I was clueless

If Janey ever does learn to talk well, I imagine one of the first things she'll have to say to me is "Why did it take you so darn long to figure out basic things about me?"  I don't know if Janey's personality is showing itself more strongly lately, or if I'm just paying more attention, or what, but this week, I am realizing that Janey really does like routines.

You are probably saying to yourself "Is this woman clueless or what?  Her daughter is autistic!  Don't all autistic kids like routines?"  Well, probably most of them do.  But with Janey, it's not always easy to tell.  Her problems with communication often leave us completely not aware what she is upset about.  The problem is complicated by the fact that Janey has a fantastic memory for small details.  That results in routines that are in her head, but that we would have no earthly way of knowing about or following, because she can't tell us about them, and we haven't even noticed they WERE routines.  Another barrier to me figuring this out---Janey is not at all bothered by new situations.  I guess, thinking about it, that makes sense.  Brand new situations don't HAVE a routine.  This explains something that always confused me---why the early weeks of school have always been among Janey's best weeks of the year.  I always thought it was that she was very happy to get back to school, and that's some of it, but it's also that she hasn't yet got the school year routines carved in stone, being in a new classroom and all, so it's not as disturbing if someone doesn't follow them.

A great example of how I'm slowly figuring this out----this weekend, I was getting Janey dressed to go shopping with Tony.  We did the pullup, the clothes, washing off her feet (as she somehow attracts dirt to her feet like a magnet) and washing hands and face.  I decided to skip brushing hair.  Her hair looked okay, and she hates it being brushed.  Her long hair is one thing I'm probably very selfish about.  I don't want her to have short hair.  I love her long hair, and I think she likes it too.  But brushing is a battle.  However, Janey balked at the door, went back in and grabbed the hairbrush and handed it to me.  I had skipped part of the routine.  I thought maybe because she was ASKING for her hair brushed, she'd be happier about it, but she wasn't---she screamed for it just the same.  But screaming or not, she felt it needed to be done.

Another example---one of the first times we took Janey to a neighborhood where my favorite thrift store is, Tony took William and her to a restaurant near it.  It was a rare attempt at restaurant eating, and by reports, not that successful.  She has some fries, but quickly got restless and they had to take most of the food home.  However, now every single time to go to the neighborhood and walk past the restaurant, she tries to pull us in there, open or not.  Somehow, that got processed as a routine, but I am quite sure if we did take her, she wouldn't like it any better than the first time.

I am sure there are hundreds of other routines I'm not aware I'm supposed to be following.  I think a lot of Janey's random screams and fits are because someone is not doing what they are supposed to be doing.  Once in a while, she can silently correct things, like how she often moves my arms or legs when we are reading or snuggling, so they are in the right positions, or how she finds a bag we once got of small red cocktail type straws that have become the only acceptable straw for chocolate milk.  But so many things are out of her control.  It's not that I would do them all, if I knew them, but if she could talk more and understand more, I could explain to her why we couldn't.  I could avoid the situations that would set up the need for a routine to be followed.  I would not be as surprised by her screams if I knew I wasn't doing what she thought I should.  For now, I will have to just do the best I can, with my memory that is not nearly as sharp as hers.

And now, for a bonus, a picture from Janey at school today!  It doesn't really have to do with the routines, but I love it anyway, and it shows how she is included and happy at school, working on a science experiment.  Thanks, Amy!

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.

Growing Understanding

Lately, Janey seems to be making big strides in understanding what we say to her.  Or maybe she always understood, but didn't respond most of the time.  But the last week or so, I feel like she's actually listening to us.

A good example was last night.  Janey wanted very badly to eat Cheez-Its on my bed.  I told her she couldn't.  She said "YES!" and I laughed and said "No!" She said "Yes!" and laughed too.  It felt like a little conversation.  Then I said she'd have to take the Cheez-its in the kitchen to eat, and she did exactly that---took them in there, grabbed a few, came back next to the bed eating them, but not on the bed, and then went to get more.  She seemed to be pushing it as far as she could without directly doing what I said she couldn't, which felt pretty typical 8 year old to me!

Yesterday we all went as a family to a great BBQ place.  We don't do much as a family of five any more.  The boys have their own schedules, and our small cars are pretty crowded with us of us in them, but I felt determined after this past week of horrors to do something as a family.  It at first seemed like it was going to be a disaster.  After we ordered, I asked Janey where she wanted to sit, and she tried to lead me out the door.  I made her come back, and we sat down, but she started to get upset.  I decided to take her back out until the food came.  As we walked around outside, I explained what would happen---"It's a meat restaurant.  They are going to bring us lots of meat and some cucumbers and some spinach and some rice.  We'll have lots to eat"  It's the kind of thing I always hear recommended for kids with autism, like a social story, but in the past, when I told them, it had no impact.  This time, it somehow clicked.  We went back in, and Janey sat quite nicely and ate.  It helped that the food was fast and great, and that no-one expects dainty behavior when you are chowing down on ribs.  At one point, sitting there, all five of us, I said "It feels like a family of five here, like Janey is the same as the rest of us"  That sounds sort of wrong, but it's a true feeling---It was one of the first times ever I felt like I was sitting down with my three kids enjoying myself, not somehow trying to keep it all together with Janey, being four caretakers and her.  Of course, the minute I said that Freddy rolled his eyes and I saw Janey had stuffed a big hunk of paper towel in her mouth, but still...the moment had happened.

There's no miracle breakthroughs with Janey.  This has still been an awfully tough week with her.  But little steps are great.  Just now, she'd been watching her videos all morning (lately, we are back to Belle's Enchanted Christmas, and I am extremely sick of it).  I decided that Tony and I would watch an episode of Coach on Netflix for a break.  Janey tried hard to grab the remote and change the show, and got it a few times.  But we both kept telling her "It's our turn for TV.  We are going to watch a show, and then it will be Janey's turn again", and gradually, she stopped trying to change the show.  I won't say she was thrilled, but I think on some level she actually got it that it was our turn.  Now it's her turn again.

School starts back tomorrow, thankfully.  I hope there is never another week like this in Boston.  But like with the city of Boston, life goes on, and you have to be strong and keep trying and keep feeling pride when you can.  It's all you can do.

Autism Friendly Day instead of Autism Awareness Day

The big exciting holiday of the year for autism families is coming up in just two days!  Yes, indeed, it's Autism Awareness Day!  I just can't wait, because that will be such a fun day for Janey and all of us---yes---all those great activities for autistic kids and their families!  What?  What's that you say?  There are really not any exciting fun times for autistic kids on that day?  What the heck?  It's just somehow a day named for autism, where for some reason you are supposed to "light it up blue"?  How is that going to help anyone?  And who isn't aware of autism these days?  Is this a day to reach out to the 1 or 2 percent of the population who for some reason has never heard of autism?

Now, of course I'm just being a little nasty.  I am glad there's an autism awareness day, and I plan to write a post about it on the day and be more with the program.  But lately, I've been thinking about what I'd like better than a day to make people aware of autism.  I'd like something I would call an "Autism Friendly Day"

Here's my dream for that day.  All restaurants, stores, recreational establishments and more would be encouraged to participate, which would mean they would set aside that one day to do what they could be be autism friendly.  Restaurants could have a night where families with an autistic child could eat out, in an environment friendly to a little bit of strange noisemaking, random tantrums and odd food choices.  The wait staff could get a quick training ahead of time about what to expect.  I would guess it would actually make the restaurants some good money on an otherwise normal Tuesday, because a lot of families with autistic kids would love to eat out with them, but don't want to have to worry about other diners being annoyed by their children.  Stores could have a special time set aside to actually shop with your autistic child, without people staring or being nasty if your kid hates shopping and throws a crying fit while you are desperately trying to try shoes or clothes on them---and maybe other shoppers could refrain from staring or saying your child seems tired and should go home.  Places like mini-golf or arcades or indoor gyms could take one day out of 365 to cater especially to autistic kids.

While I'm dreaming, maybe schools and churches and community centers could get in on this.  I am extremely lucky Janey goes to a school where she is always included, but not every child is that lucky.  Maybe for that day, the separate autism classes could join the regular classes, and the "regular" kids could learn about autism, and meet some fascinating kids with autism they would otherwise not know.  The Sunday closest to Autism Friendly Day could be a day for churches to welcome families affected by autism.  That would be wonderful---our family could try a church together, something we have not been able to do since Janey's regression.  Community centers could open to kids with autism for recreation---they could have some classes or open gyms set up.

I think this day would do a lot more to raise autism awareness than the current setup.  Nothing makes you aware of autism like actually spending time with a child with autism, or an adult with autism.  You can't learn about autism solely by reading about it.  And becoming more aware of what autism actually is would benefit everyone.  Businesses and churches and restaurants would benefit tremendously if they reached out to families that have simply stopped using their services due to their autistic child.  The general public would learn what the real needs are of families affected by autism, and the fear of the unknown that I am sure often keeps people from getting to know our kids would be reduced.

Best of us, this day would actually be a fun day for families like ours.  It would be a treat, in a life that often is stressful and tiring and isolating.  It's a dream, but I think it could easily be reality, without a great deal of cost or bureaucracy.  I'd love it.

Successful dinner out---knock on wood

We just got back from eating out with Janey, at an actual sit-down restaurant.  I can't think of the last time we did that successfully, and I don't know how I got up the courage to try.  I was feeling hemmed in, and also drawn in by the constant commercials you see for chain restaurants---meals that look incredibly good and reasonably priced.  I know they often aren't as good once you actually get them in front of you, but I'm a dreamer.  So we drove out into the night (all but Freddy, who begged off due to homework) and started thinking about where we should try.  We drove into the parking lot of a Chile's, but Janey took an instant dislike to the place.  She answered very clearly when we asked if she wanted to eat there---"NO!"  We tossed around a few more ideas, and then drove to a Uno's (used to be Pizzeria Uno's).  Janey seemed to like the looks of that place better, and we went in, ready to leave as soon as it became necessary.  And it did NOT become necessary!

Some of the keys---the crayons they gave Janey---she didn't actually draw with them, but liked holding them.  Getting her chocolate milk stat (it didn't arrive quite as quickly as she'd have liked, which we did hear about from her).  Taking her for a walk the one time she asked.  Getting the right table, a booth in a quiet area of the restaurant.  Ordering her a kids' steak and fries.  What didn't help as much as you'd think---having the iPad there.  Janey seemed to feel it was out of place in a restaurant environment, and wouldn't play with it at all.

And then there's luck, or karma, or whatever.  At one point, Janey tossed her crayons into the next booth, hard.  Tony got up to get them and said he was sorry, that she had special needs.  One of the women there laughed and said "Don't give it another thought.  Our family is full of them!"  When they got up to leave, they stopped to say hi, and that is when I realized one of the three middle-aged women, who I think were sisters, had Down Syndrome.  That woman especially was sweet with Janey and made a point to try to connect with her.  Then, as we were leaving, I somehow felt compelled to tell the waitress we hadn't tried a dinner out at a sitdown place with Janey for probably four years, and that she was autistic, so we were very happy how well it went.  The waitress said casually "Oh, yeah.  My sister is autistic too"  I left feeling less alone that I often do.  There are other people out there living a life similar to ours, and the life we will someday live, with adult children or siblings with special needs.  There are lots of us.  It doesn't always feel that way, but there are.

We gave Janey a big high-five after the meal, and let out our breath.  It won't always work that well to attempt to live the ordinary life, but it's good to know we sometimes still can.

Old Country Buffet night out

I am not a huge fan of Old Country Buffet, but we have discovered that Janey is. We went there a few weeks ago, and she had a wonderful time. Last night, we were engaged in one of our favorite family pasttimes---driving around having an extended argument about where we should eat. With strong individual tastes, a limited budget and a family full of people unafraid to express their opinions as vehemently as possible, it's a good time. And for the first time, Janey got truly in on the fun. We were about to go into 5 Guys, the burger chain, and she completely freaked out. That isn't new---she often does that when we go out places. I was ready to pack it in and go home, or maybe just get a little McDonalds, but we decided to sit in the car for a bit and talk to Janey. We asked her "Where do you WANT to eat?" I think we gave it a try because she was in an extremely good mood right up until we started into the 5 Guys, and so we had a feeling it wasn't just general crankiness. It took a lot of asking, and wording things differently, but eventually she said "I want to go to the buffet!" Of course, we weren't sure if she was just talking to shut us up, or not really meaning what she said, but we headed to the buffet. There was a huge line, and I almost just gave up again, but Tony asked her "Do you want to wait in the long line or go home?" and she said strongly "Wait in the long line!" And she did---for the most part, very patiently, for about 20 minutes. And when we finally got seated, she was as happy as a clam---eating a lot, all smiles, just seeming very pleased that we understood her and she was where she wanted to be.

There's a lot about Old Country that works for her. You get the food right away, it works for people with odd tastes, it's a loud and happy environment, and, well, to put it delicately, being a little odd doesn't exactly set you apart there. If aliens landed on earth, and they looked like some of the people in that bar scene in Star Wars, they could go eat at OCB and fit right in. Janey was so happy she spent a lot of time making her loud happy noise, the long drawn out "AHHHHHHHH!" and although she got some looks, we gave some looks to others as good as we got.

Tony and I were talking about how we can take Janey back to the Old Country for her birthday. It's good to know a place that's truly a treat for her, even if it's not our choice. It's great we are able to include her in the family tradition of advocating for favorite eateries and dissing everyone else's as loudly as possible. It's fun to have her be just one of us.

The Bystander's Guide to Reacting to Autism

Let's say you know next to nothing about autism. You are out in public someplace, and you see a kid (or an adult) acting very strangely. Perhaps they are crying for no reason you can see, or flapping their arms around, or laughing over nothing, or repeating the same phrase over and over in the same tone, or obsessively talking about a topic, or just plain looking odd and unconnected, or staring at their hands, or any number of other behaviors that just look off. How should you react? Here's your handy guide!

Your first option, and probably the best one----if the child isn't affecting you in any way, just ignore them. You don't have to react at all. This is the option most people choose, and it's fine.

However, if you feel you must or if you want to react, one handy trick is to find the parent and to smile at them. Smile that understanding smile that says "Hey, we've all been there" or perhaps "I see your interesting and intriguing child" or even "I can tell your child is autistic, and I just want to give you a smile of support". Any of those smiles, those looks, will generally be welcomed by a parent or caregiver.

But what if the child is bothering you or annoying you? Well, first of all, judge how long you'll really have to be in their presence. If you are on a subway, or in a store, or grabbing some takeout, or in a park, are you really going to have to be around that child more than a few minutes? Can you find it in yourself to think "yes, they are being a little annoying, but I know their parents are doing the best they can, and they live with that child all the time. They are dealing with a disability, and what would I have them do? Hide the child away?" Think those things, and then go back to idea #1 or idea #2. Ignore them, or be supportive and smile.

What if you have to be with the child for longer? Well, then, think about whether the parents have any choice about bringing their child to be in your presence. Are you in a doctor's waiting room, and they are too? Or are you at a playground with your children, as they are with theirs? Then ask yourself---what if the child had a physical deformity that upset you to see? Would you say "Why would they force me to be in the presence of that child? They should have kept them hidden away. They shouldn't have taken them for medical care or to a public recreation area" Then change the words physical deformity for mental disability, and think how you think about yourself for thinking that way.

Now let's go over the rarest of situations. You are at someplace you paid to be at, trying to enjoy yourself. You are at a restaurant, or a movie, or a museum. There is an autistic child there, screaming or laughing or talking loudly. Their parents don't seem to be succeeding in quieting them. They are bothering you, and you feel like your outing, for which you paid good money, is being ruined. You feel like giving those parents a piece of your mind, or at least asking them to leave.

This is where it gets tricky. But for a minute, put yourself in the shoes of the parents. Perhaps they haven't eaten out as a family for years. They have decided to give it one more try. It isn't going well. They have paid for their meal, and they are going to do their best to get through it. Perhaps the mother is aching to take the child out to the car, to once again sit outside so the rest of the family can enjoy the meal and so strangers aren't annoyed. Or maybe it's the museum. The child loves whatever the museum shows, but the parents have resisted taking them there, knowing that their behavior might bother others. Finally, one day, they give it a try, bracing themselves for the situation.

There's no good answer here. The kind thing to do, the compassionate thing, would be to go way back to the first two ideas. Ignore the child, or smile and support the parent. Or go ahead. Complain. It isn't fair to you. You'll make the parents extremely hurt, or extremely angry. They will learn their lesson. They will learn to keep that child home. But keep a little statistic in mind. They say one in 88 children is autistic. You might be the next one with autistic child. Or grandchild. And what goes around, comes around.

I'll end with a thank you, a thank you to the probably 95% of people who ignore or smile. Thank you for giving me the courage to give Janey a full life. To the 5%, I am sorry. I'm sorry if my child has disturbed you. I can sincerely say I hope we don't cross your path again.

The Mall

Freddy and I took Janey to the mall today. I don't go to malls much at all, and especially not with Janey, but Tony needed to do work around the house and it was raw and rainy, and I couldn't think of another place to go to get out of the house for a while. Janey didn't care for the mall---big surprise. She didn't do that badly at first, although I didn't attempt to actually shop or go into any stores, but she didn't mind walking around, and she was quite happy to take some escalators---she loves them. I went into the Target at the mall and let her look at the toys, but she mainly just knocked them to the ground and tried to escape. Luckily, Freddy is quick and caught her. And soon after that, she'd had enough, and started screaming. I could almost relate. I feel overstimulated at malls too. But we had promised Tony to try to stay out of the house for a while longer. We tried going to Five Guys and getting a burger, as Janey likes their fries, but she was not up to the line and did one of her latest tricks---taking off her shoes and tossing them a bit. I gave Freddy money to get the food and took her to the car, and we ate there. That went fairly well, until she decided to spill soda all over. We headed home after that, although Tony wasn't done, but I was out of ideas.

Of course, it all made me think. There is little I can with Janey. We can't eat at restaurants, we can't shop (except a quick grocery shop, which she usually tolerates), we can't go to other people's houses usually, Janey doesn't have playdates or lessons, she yanks books and is loud in libraries, if she isn't crying----there are so few options. I could not even have done the brief mall walk without a wingman in Freddy---she'd have been lost in the Target, most likely. When the weather is better, we can sometimes go outside places, but I have to hold Janey's hand at all times unless we are in an extremely secure place. Autism itself is isolating, but the lack of ability to do normal everyday things with autistic kids creates even more isolation for them. I am so thankful for school and after school, and summer school. But I wish Janey's world didn't have to be so small.

World Autism Awareness Day

Well, here it is, World Autism Awareness Day again, and I don't have a single WAAD card out.

I did a quick look today to see what kind of events are planned for today. As I kind of half expected, I didn't really see any that were FOR autistic kids or adults. Lots of fundraisers, walks, lectures, etc. But not something I could take Janey to. I am grateful for the awareness, for the research, for all of that. But if it's autism AWARENESS day, perhaps it would be a good day to expose people to actual human beings with autism---to let them see what autism actually is and isn't. I had ideas like having restaurants have a special time, from 2-4pm or something, where they would just for that day be autism-friendly, and you could go there and not feel worried if your kid screamed the whole time, or spilled water, or ran around. You could just sit and eat a meal among other families with autistic kids, and smile at each other, and enjoy being out. Or another idea---places like indoor gyms or pools could have an autism time every April 2nd, so you could get some family recreation. Or maybe somehow there could be highly staffed parties for JUST the kids, so you could drop them off for an hour or two knowing they were doing something special and fun, while you got a break. You know, sort of like how parents of "typical" kids can sometimes take their kids to birthday parties and LEAVE them there and get coffee---that kind of luxury treat for everyone!

But those are dreams. I have to be content that Janey is living in a world that certainly IS more aware of autism than a world 20 or 40 or 100 years ago would be. I am very lucky that way. People know what autism is, kind of, even if they haven't met a lot of people with it.

I'm thinking of ways myself I can actually live up for the name of the day. How I can I make people more aware of autism? One thing I try to do is tell people Janey is autistic. I like to do that for many reasons. It explains her behavior, it lets people know she isn't just being rude in not answering them and it lets them meet someone with autism. It has worked well for me overall. There are quite a few stores where Janey is known, and I feel good about that. This blog is another way---I try my very hardest to write honestly here---to bare my heart about Janey, not just the bad but the good. I wonder if I show the good enough---that's a part of autism I want people to be aware of to---that Janey is a delight often, that she is fascinating in a lot of ways, that I love her intensely and I always will. I want to give some hope to other parents with newly diagnosed kids. But I don't want to lie. I don't want to say it's better than it is, I don't want to be all sunshine and flowers. I want to be honest. I can also encourage my sons to talk about Janey. I sometimes suggest her as a topic for essays at school, or tell them to not hesitate to explain to friends why sometimes they prefer to spend time at other people's houses instead of having kids here. I want them to be proud of her as a sister, but to also let them know it's hard, it's something THEY should be proud of themselves for---being good brothers to her.

And so awareness is a good thing. But I wish this day could somehow also INCLUDE those with autism, instead of just being ABOUT them.