Monday, May 25, 2015

Pictures sometimes lie

I love to take pictures.  It's a bit of an obsession with me.  Yesterday we went to a friend's lakeside cabin.  We were delighted to be invited, because Janey adores the water, boats and the friend.  I took a lot of pictures, and in looking at them, I thought a lot about how I sort out which pictures I actually keep and look at.

I don't save a lot of pictures of Janey when she is upset, screaming, unhappy, lashing out or crying.  There's a couple reasons for this.  Of course, I want to remember her as happy, and not sad.  Also, I've read a lot of opinions that people feel it's just wrong to post pictures of their kids when they don't look their best.  The argument usually is that it's not fair to the children.  I also, like most people, just like happy or calm pictures best.

But it's striking me lately that pictures lie.  Or they don't tell all the truth.  If you look at all the pictures I have of Janey, it would be very hard to really know her story.  I don't take many pictures of her when she's biting her arm, or hitting someone, or crying hysterically, or screaming.  I take pictures where she looks, for the lack of a better word, close to "normal"

And so, when looking at yesterday's pictures, a lot got left out.  Janey had a wonderful time most of the time, yes.  She was happy in the car all the two hour ride up, she danced with happiness when we got out, she was thrilled to "ride" in the docked rowboat, she had a great time going in a little paddle boat with her father and brother, she ran around in the big yard joyfully for a long time.  But around five, the witching hour, she lost her cool.  She screamed for a long time, and then, when I tried to comfort her, bit me, very hard, on the hand.  On the ride home, she tried over and over to bite Freddy.  We came home a bit discouraged, although the majority of the day was great.

But looking back at the day, the hard parts won't be documented.  And sometimes, I think this does our kids a disservice.  I know when thinking about my life, I don't like it to be whitewashed.  I don't want to think every single moment was joy and contentment.  Is that what we want our kids to think?  Janey's anger and sadness are a big part of her life, but by blocking that out, either through choice or from societal pressure, we are left with a sanitized view.  People would be forgiven, if they didn't look further than pictures, to think autism was an interesting and quirky variation on the norm.

I don't think I'll start taking or post more pictures of Janey when she's upset, though.  I'm not quite there yet.  But I wish that I felt freer to do so, both freer from within and freer from without.


Wednesday, May 20, 2015

"But there are no services for my typical kid!"

When I write about the lack of help, especially respite, for Janey, an argument pops up a lot.  It's not so much one that anyone has the guts to SAY to me, but one I know people, people outside our autism tribe, might be thinking.  It goes like this "Why should you get help with your daughter?  I have a kid without any special needs, and nobody is helping ME!"

When I hear this, I laugh.  A deep, ironic, non-funny laugh.  Because of course the typical child gets help, and of course the typical parent gets respite.

Let's start right in my own neighborhood, in fact, within walking distance of my house.  I live in a working-class part of Boston.  Not a fancy suburb, just a regular type place.  And if Janey had no special needs, here's the respite I could get at low or no costs...

A community center that holds camps during all vacations, for very low prices

A YMCA with camps, Saturday programs and all kinds of activities

A small theater with vacation and summer programs

A summer program to learn tennis

Summer programs at several nearby school, with academics and field trips

Dance classes, with camps

These are just the ones I can think out without a bit of research.  During a typical vacation, I could choose from lots and lots of places I could walk, and could afford.  I could drop Janey off there and have a whole day to myself, while she had fun with other kids.  And if you think these programs aren't subsidized, think again.  They are heavily subsidized by the city, or by the Boston schools, or by donors.  They are available to anyone.  Anyone but someone like Janey.

Now, if we open it up to the city at large, there's hundreds, probably thousands, more possibilities.  There's the Saturday program I've so often mentioned, for "special needs" kids.  Not Janey, because they have to be able to handle a 4 to 1 ratio.  There are music programs run by the school district, absolutely free summer programs, all day camps.  There are a huge number of programs at community centers.  There are nature camps run by the Audubon Society.  There are so many choices, choices I could actually afford, that I would have a hard time picking.

And what is there for Janey?  There is nothing.  She gets summer school, the incredibly shrinking summer school, which becomes less weeks and less days a week each year.  She goes to regular school.  That is it.

It is an ironic, sad thing that the families most desperately in need of some respite are the same families for which there is none.  So don't say for a millisecond that your typical kid doesn't get services, doesn't get help.  They do.  We live in a society, despite anything anyone might want to think, where Janey is excluded from so very much by her disability.

Monday, May 18, 2015

Ready for the help that doesn't exist

Today wasn't much of a good day.

Janey has been having a hard time lately.  The new medication, if it's doing anything, isn't doing much.  Janey seems very unhappy, and her aggression has increased.  She's hitting me a lot, and over the weekend, she tried very hard to bite me over and over.  Tonight, she bit Freddy out of the blue, quite hard.  School reports aren't good either.  Her teacher reported that she was screaming a lot, and biting randomly, and reacting very strongly when anyone tried to get her to sit down and work.  I've seen that at home---a quick and angry reaction to any redirection or being told "no".  We are feeling overwhelmed.

Over and over, we've been asked if we have had in home ABA services.  I always said no, and that it wasn't help we wanted at this point.  I am becoming less and less of a fan of ABA as the years go by.  Janey doesn't seem to respond to it well.  And the help we need is RESPITE, not someone coming into the house in a situation where we can be at furthest from Janey in the next room.  I can picture Janey screaming non-stop, trying to bite the therapist, them looking to me for help I don't have.  I can picture cancelled appointments, as we found to be the case with Early Intervention, leaving us sitting around the house without plans waiting for someone who never shows up.  I can picture spending the rare moments of peace I have cleaning up in anticipation of therapists arriving.  I can picture....well, you get the picture.

However, the doctor at the Lurie Center and several other people have implied that I need to get this service as sort of a starting point to get any other help.  And lately, I'm ready for any, any, any help I can get, including someone to come in and work with Janey.  I'm ready for any suggestions, for even a ten second moment of respite in the next room.  I felt ready, finally.

SO----here's the kicker.  I'm ready.  I called the family service person for the Lurie Center.  And what I half suspected to be true is indeed true.  We CAN'T GET in home services.  We have the wrong kind of insurance.  Tony has federal Blue Cross, which for some bizarre reason is exempted from the FEDERAL laws mandating coverage.  The Mass Health supplemental plan we recently got for Janey ALSO doesn't cover ABA in the home.

Which means, of course, the only help anyone ever said there was didn't actually exist.  Not for us.  Not now.  Supposedly, starting this coming winter, Mass Health will cover ABA, but there will be waiting lists and huge backups and priorities for younger kids.  In reality, even then it's not going to be easy to actually get.  And for the past few years, when I've been thinking I was someone holding out on help that I didn't think would be that helpful---well, surprise.  I couldn't have gotten that help anyway.

So where does that leave us?  THERE IS NO HELP.  That is something I am putting in caps, because despite it being the truth, I think many people still believe it isn't.  I asked the family service person today, in any way I could think of, if there were ANY respite available, ANY program Janey could attend on weekends, ANY way to get more help.  And the answer was...no.  There isn't.

I have a child who requires around the clock supervision, who is aggressive to the point of hurting us, who cries for hours on end, who is not toilet trained, who bites herself badly all the time---and there is no help.

I guess this the reality I need to accept.  The feeling I got, the implication I felt I was hearing, at the clinic is that the only real help is now and then kids going into hospitals like Bradley, where Janey went in November.  I'm not willing to accept that.  Although our insurance was very good at covering it (but not Children's Hospital---they are supposed to pay some of that bill, but have yet to pay a cent), it cost the insurance a huge amount.  It makes no sense---they will pay for a psychiatric hospital but not the much cheaper help that could keep her out of one?

I will stop now, for fear of rambling.  But I wanted to get this down before I calmed down, for a change.  I try to not get angry.  I try to not get upset.  But tonight, I am.  Janey is my daughter.  I love her.  I will care for her as best I can for the rest of my life.  But somewhere, somehow, something is drastically wrong when there is no help at all for those like her that need it most.

Wednesday, May 13, 2015

Autism on the Airplane and the questions it raised for me

By now, if you are reading this, you've probably heard the news story about the pilot who made an unexpected landing to remove a girl with autism from his plane, after her mother requested a hot meal for her so she wouldn't have a meltdown.  If you haven't, here's a link.  I'm not going to get into all the ins and outs of this incident, but it seems to have caused a lot of discussion---some of it focusing on the mother and what she should or shouldn't have said and if she was or wasn't handling the situation well.  I'm not going to give an opinion there, because I don't have one---I wasn't there.  I can't speak just from the perspective of being the mother of an autistic child, because we don't speak as a group.  Autism hits people randomly, and the mothers of autistic kids are not any one type, with any one characteristic.

What I can discuss is the questions this raised for me about Janey specifically---the one autistic girl I know well enough to talk about.

If Janey is having a severe meltdown, she is very capable of hurting people.  And she has.  The nightmare moment of my whole life so far was when she freaked out in the emergency room at Children's Hospital, bit me badly, tried hard to bite some nurses, threw objects around and attracted a crowd in the room, including some police officers.  If I ever have a worse moment than that, I hate to think what it might be.

We don't always have a warning that Janey is about to melt down, or much of one.  And even if we do, we can't always fix the situation that is causing the meltdown.  I do feel a responsibility to the people around Janey to keep them safe.  So---what does that translate to?  Do I never take Janey anywhere at all, because there is a chance, however slight, she might melt down and start lashing out?  If this is the solution, Janey wouldn't go to school.  She wouldn't go to stores.  She wouldn't go anyplace.  I can't feel, right now anyway, that that is the correct solution.

How do I balance Janey's right to live in society with society's right to be free from being hit, scratched or bitten?  I think I have a responsibility to take reasonable precautions.  I would not let Janey run around free at a playground full of smaller children.  She can be hugely provoked by crying, and sometimes just randomly she lashes out at littler kids.  If we take her to a playground, we stay right by her side, and I don't attempt to take her alone to places with a lot of kids.  When Janey is out of the house, she is under the direct supervision at all times of an adult.

So, what if I got into a situation with Janey like the one on the plane?  What would I do?  I'll leave aside for now that we aren't going on any planes any time soon, because we can't afford it and because I am terrified of flying.  I'll imagine that somehow we ARE on a plane, and something has triggered Janey---maybe a baby crying.  I'm imagining her freaking out, lashing out, acting in ways that sound far, far beyond anything the girl on the plane in the news did.  What do I do?

I don't have an answer to that question.  I'd of course try to keep her from hurting anyone.  I'd try to calm her down.  But she would attract attention.  It would be a scary scene.  I don't know what I'd do.  I really have no idea.

Most kids with autism are NOT like Janey. She is not the majority.  But other kids like Janey do exist, to be sure.  And exactly how we as parents and we as a society deal with them, help them---that is a question we need to figure out.  It's a question I personally need to figure out.  Janey has much to offer the world.  She is amazing in so many ways.  But the world is in many ways not set up to deal with Janey, and I am just not at all sure how to handle that.

Sunday, May 10, 2015

Happy Mother's Day---Autism Style!

I woke this morning feeling good, feeling hopeful after our good clinic visit, feeling like it was going to be a good Mother's Day.  I spent some time in bed reading, and then called my own mother.  We had a good brief chat, brief because Tony called me after a few minutes to get off the phone and help him with a "pull-up incident", the lovely kind that involves washing all the bedding and giving Janey an immediate shower.  We dealt with that, and then I decided to do dishes.  They had built up in the sink.  To make doing the dishes a treat, I put on my guilty pleasure Pandora station, my Barry Manilow station, which I have modified by using the thumbs up and thumbs down feature over the years until it plays only songs I love when I am in the mood for guilty pleasure songs.  I rocked out a bit to "Sometimes When We Touch", "Don't Give Up On Us Baby" and "I Wanna Make It With You", and then Tony and I had a cup of coffee, at least until Janey came in the room and we realized we must have missed something in our survey of the bed area, because she was again covered with...you get the picture.  So I gave her another shower, got her dressed again, and sat down with my now fairly cold coffee to write this.

And this morning so far, looking back on it, is a good slice of the Autism Mother life.  We get our fun where we can.  We enjoy the little moments, because we don't have the time or energy for big moments.  We take the days as they come, for the most part.

We are the mothers that will probably never get spontaneous cards or presents from our girls with autism.  We will get sweet cards the school makes up, or our husbands make up, but our girls are unlikely to go out and ever get us a present.  They might say "Happy Mother's Day!", if they are verbal and if they are prompted, but that's about it.  In many ways, being a mother to a child with autism is literally a thankless job.

However, we have our little moments.  We have the times our girls do something we never thought they would.  We have the moments when we look at them and think "What a beauty she is becoming"  We have the moments when we realize they are never going to scream at us that we are the worst mothers on earth, or demand to wear the latest styles, or run off to join a motorcycle gang.  They are going to be our girls for life, most likely, and while there are days (many days) that is incredibly hard, even tragic, there are other days, or maybe moments, when we can take comfort in that.

We aren't chosen.  We aren't saints.  We aren't heroes.  We are picked by chance.  We are members of an exclusive club, one most people would not join given the choice.  However, my years in this club have led me to feel we are, for whatever reason, a pretty cool crew of woman.  So here's to Michelle, to Sara, to Jamie, to Melanie, to Abby, to Rebecca, to Autumn, to Janelle, to Ewa, to Becky, to Claire, to Audrey, to Laura, to each and every one of you, every mother who is part of this club.  The happiest of Happy Mother's Day!  Grab a cup of coffee and let's have a toast to us!

Friday, May 8, 2015

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.

Thursday, May 7, 2015

The Car Wash Movie Theater

A few lots down from our house, there is a gas station with a car wash.  The car was is kind of a high tech one, and when it washes cars at night, lights flash.  We can't really see it unless we are in the back yard, and I'd never thought much about it, or considered that Janey had thought about it at all.

However, a few nights ago, we were in the back yard in the evening, and Janey suddenly said "Want to go to that movie?"  We were confused, and thought maybe she meant she wanted to watch a video inside.  But she persisted "Want to go to that movie right there over there?"  She isn't much for pointing, but she was looking in the direction of the car wash.  We asked "Do you mean where those lights are over there?" and she said "Yes!  Want to go to the movie over there?"

The result of a search for an image combining "Car Wash" with "movie"!
We were quite surprised.  I had no idea Janey would have any idea what a drive-in movie would look like.  She's only been to a regular movie theater once, and it looked nothing at all like the car wash.  But the car wash DID look a great deal like a drive-in movie would look at night, viewed from a little way away.  It blew my mind.  Once again, Janey had shown us that she understands and knows about far more than we realize.

I wonder how long Janey had thought that there was a movie showing right down the street from us, one that for some reason we had never seen fit to take her to or mention.  It made me think, as I do more and more, about how confusing and overwhelming it must be to be Janey.  There are so many things she understands more than we realize, but so much she doesn't understand, and the combination probably makes the world feel like an arbitrary and unpredictable place.

Janey's brother William came home from college two days ago.  Janey was asleep when he got home, and she went to school before he was up the next morning, so the first time she saw him was when she got home from school.  She was overcome with emotion.  She hugged him over and over, back away, just looked at him, and then hugged him again.  It was like seeing someone greet a soldier home from war.  I thought about how little I think she understands that he is at college---how she probably has no real idea what college even is.  In her eyes, people disappear at times, for days or for months, to go to places that have names but that she can't picture at all---"college", "work", "high school".  They must seem to come and leave at random times.  I think it's why she gets so upset if Tony is home even a little late from work, or sometimes if it's home early.  She has figured out his schedule, and that feels like something to grasp in the uncertainly.

As I slowly try to understand Janey's perception of the world, there are still always mysteries I can't figure out.  After Janey hugged William, she kept saying "There is my mother!  There is my mother!"  I was near them, but I don't think she was just saying that.  Somehow, she was trying to tell William something about me.  Maybe she was realizing that I am William's mother too, or saying that William and I look alike, which we do to some extent.  Maybe she wanted to make sure I was joining in the excitement, or commenting on how we were all together again.  I don't know.  I wish I did.

I think if I could better understand how Janey sees the world, I could better help her deal with it.  I could try to find a way to explain to her where people go when they aren't here.  I could take her to the car wash and show her it's not a movie.  I could talk to her about whatever she was trying to say about William and me.  I would hope she'd be happier in a world she better understood, but it's a huge challenge to find ways to figure out what she is thinking, what she grasps and doesn't grasp.  She is a career, a life's work, a joy and a puzzle.