Tuesday, April 21, 2015

Oh, Janey, how can I help you?

Janey, very unhappy
It's vacation week, and Janey is not happy.  As always, it's hard to say exactly why.  She doesn't care for the change of routine that vacation brings, ever, and this one, with neither brother around, seems to be hitting her extra hard.  Tony is working half days, to help me keep my sanity, but even that is tough.  She isn't sleeping well---she was up last night at 3 am.  Much of the day today featured hysterical crying, and when she wasn't crying, she was furious---lashing out at me, asking over and over to do things we couldn't do, just miserable.  And I am asking myself what I so often ask myself---Janey, how can I help you be happier?

An odd moment a few days ago got me thinking about what Janey wants and needs.  I showed her a video of Carly Fleischmann, a girl with autism who communicates by typing.  The video showed her at a coffee shop and illustrated the kind of frustration that builds up when you can't communicate verbally and there are all kinds of sounds and distractions.  Janey watched the video avidly.  Afterward, I told her that the girl in the video had autism, like she does, and that she couldn't talk with out loud words, and talked with typing.  I said maybe we could find some way to help Janey talk more easily, too.  Janey looked at me, with a look she only gets once in a long time, a look of clarity and directness, and said "I know how to talk".  I said "I know you do, but sometimes talking is hard for you.  That's why I'd like to find other ways to help you tell us things"  Janey again stared at me, and said, in a voice that was beyond firm, "I KNOW HOW TO TALK".

Janey has always resisted assisted communication type things---iPad programs, PECS type programs, typing, sign language---anything besides verbal talking.  I have always wondered how hard I should push her to use other ways to communicate, since her talking is often so limited.  But I feel like she has spoken, literally.  It was one of those weird moments---one that thinking back is almost hard to believe happened.  But it did.

And so, Janey, how CAN I help?  How can I better understand why you are so unhappy so much of the time?  Why did you cry and cry and cry today?  Why do you ask, a thousand times a day, to "go see Maryellen" or "Go see Auntie Carrie" when I've tried so hard to explain we can't at that moment?  Why do you want your bathing suit on all the time to go swimming, when we have no-place to swim?  Why do you ask me to snuggle you, and then lash out and hit me and scream when I do?  Why do you want to watch Little Bear, but cry every time we put it on?  Why do you resist toilet training so much?  Why do you bite your arm?  Why is it so hard, so very very very very hard, to keep you happy?

A little calmer, for a few minutes, walking with Daddy.
I would do anything to make Janey's life a happier one.  But I don't know what to do.  I have no idea what to do, most of the time.  And the days go by, and the weeks, and the years, and it's not getting any easier for any of us.

Sunday, April 19, 2015

Just Janey

Our Sunday morning---Janey is playing "Born to Boogie" by Hank Williams Jr. over and over on the iPod.  Tony is cooking his non-stop weekend breakfast of bacon, greens and toast.  Coffee is flowing freely.  And I am thinking that this day, this week, is a preview of the rest of our lives.

It's just Tony, Janey and me here.  William is at college, and Freddy is, amazingly, in Venice, Italy.  Thanks to the generosity of his school and his uncle, he's on a school trip through Italy for the week.  And we are getting a glimpse of the life we will most likely live until we are no longer here to live it.

It's not a bad life, right now.  Janey has been in a good mood for a few weeks now.  It's not a perfect mood---she can fly into a rage several times a day, and she is often very upset if what she asks for doesn't happen immediately.  But compared to how her moods can be, it's wonderful.  She loves to be on the go, and she and Tony spent yesterday on numerous errands, which she enjoyed very much.  I miss the boys very much, but I know they are happy, and I admit it's somehow freeing to have only one child to take care of.

But forever?  That is the part that sometimes feels very tough to think about.  There's a chance, of course, that someday Janey will be in long term care.  But I like to live in reality.  From all I read, it's very, very hard to find care for someone like Janey.  Only about 15% of autistic adults that can't live on their own have housing not with their parents, from what I've read, and most of those are adults able to function at a lot higher level than Janey.  Janey would need round the clock care.  That is expensive and rare.

From what I am told, I need to start right now working toward the goal of Janey living away from home.  The route for doing so is not something I'm ready for at this point---it would involve giving up more control of her care that I am willing to do right now.  Maybe I'm being shortsighted.  There were certainly days last late fall I was ready to do just about anything needed.  But lately, the new medication and the new behavior plan at school seem to have calmed Janey.  I can picture, if things stayed as they are right now, a life that involves Janey home with us for good

Yet even as I write this, Janey comes over to me and says "Want to snuggle?"  This means---stop whatever you are doing right now and give me undivided attention.  If I tell her to wait, she screams, hits me, freaks out.  I get her dressed, and while doing so, ask her to get me a pullup, something she easily understands and can do, and she gets hysterical at the request.  After ten minutes, I am exhausted.  But incidents like that blend into the day, and if they don't last all day, I still think of the day as a good day.  I think that is why even on a "good" day, I am tired, at the end of my rope, by the time Janey finally goes to sleep.

Life with Janey feels full of impossible choices.  Do we push all out for away from home care for Janey, even though we are unsure that is what we need right now, so we'll have a better chance in the future?  Do we resign ourselves to a future that is quite limited by Janey's needs, or do we do what we can to preserve a life that is fuller for us, but uncertain for her?  Do we gamble on our health remaining good enough to care for her long term?

There are no easy answers.  And our choices are far from unique.  Around the world, so many others are living a life like ours---with children getting old enough to start the questioning---will this be how it is forever?  Sometimes, I admit, I wish myself back to William or Freddy's age.  I wish I were in college, or on a tour of Italy, my life ahead of me.  But I am here.  I need to figure out how to make this life work for all of us.  To all of you out there facing the same questions---best of luck.

Sunday, April 12, 2015

My surprising thought, twice this weekend

Twice this weekend, I had a thought that I don't usually have.  I thought "I'm glad Janey is autistic".

I hesitate to even write what I wrote above, for a million reasons.  A few of them---I don't want to ever be a Pollyanna, someone saying that autism is a blessing.  And the inverse---I don't want to say that I usually don't want Janey to be who she is.  My usual state of thinking goes along the lines of wishing that Janey wasn't affected by the tough parts of autism.  Autism hasn't been terribly kind to Janey.  She is not one of those autism poster children, the kind that I think are pretty rare in real life, the kind with futures so bright you have to wear shades.  Autism has taken away much from her.  But that doesn't mean that she isn't an amazing person, someone I value very much just as she is.  But feeling glad she's autistic?  No, usually not.

So what happened this weekend?  Well, first, I realized that despite my burying my head in the sand, soon both boys would be out of the house.  We put the deposit down for Freddy to go to Skidmore College this fall.  He went to visit for three days there, a preview of life without him home.  Next year, come September, both boys will be in college.  It's harder than I ever pictured it would be to face that.  Of course, I am thrilled my boys are going to college, to colleges that will challenge them and allow them to explore their interests.  William loves Brandeis, and I think Freddy will love Skidmore.  But they won't be at home, and selfishly, that is very hard for me.  I loved being the mother of teenagers.  It will be very, very quiet without them.  And then I thought---this probably won't happen with Janey.  She isn't going to leave.  We get to keep her home.

It's a sign of how Janey's moods change that during her worst times, the thought of her being home forever leads me to despair.  But she's in a sunshine mood lately, and I have become by necessity very good at putting aside bad times when times are good.  When Janey is happy, none of the rest matters.  It doesn't matter that she isn't toilet trained, that she has a hard time talking, that she has very few academic skills.  It only matters that she is my daughter, my funny, unique girl.  Now, a few weeks from now, when the screaming and sadness most likely will have returned, I know I will feel differently.  I'll still love her desperately, but I won't feel as optimistic.  But I'm talking about how I feel right now.

Not our actual soup, but something like this!
The second time I had the "I'm glad Janey is autistic" was a littler thing.  Tony had made up a big soup of various vegetables.  We get a bin of organic fruits and vegetables every week, and he loves trying them.  He was sharing with Janey, and noted, as he often does, that she was only eating the green stuff---the kale and collard greens, not the rutabagas.  And I was thinking how much she loves the foods she loves, and cares not a bit or even knows that most kids don't like what she likes.  I was thinking about her dream mornings on the weekends, watching Tony cook and eagerly eating what he makes her.  And how most 10 year old girls would already be at the stage where a fun morning at home with Mama and Daddy, eating greens, would not be a thrill to the point of dancing around.  And again, I thought "I am glad Janey is autistic"

The truth is, of course, I'm not glad Janey is autistic.  This is because Janey's autism isn't her.  It's something she has.  You don't love a child for things they have or do, you love them for being them.  I don't love my boys for getting into college, for their senses of humor, or even for their kindness to their sister.  I love them because they are my sons.  And I love Janey because she is my daughter.  I love her just for being her.  But at times, I can love, separately, the traits that she has that are partly because of autism.  I can love the life situations that autism creates, like knowing she will probably never leave home.  I don't love autism.  But I love Janey, a girl with autism.

Tuesday, April 7, 2015

Screaming Trumps Theory

For a few weeks, Janey was very happy.  As is usually the case with her, we really weren't sure what was working---her new medication, spring finally arriving, the new behavior plan at school---it's never easy to say.  But she was calm, sleeping well, talking a bit more...and although I try hard to keep an even keel, I was feeling more hopeful about the future than I had in a while.

When things are going smoothly with Janey, I am able to step back and think more about autism and her particular form of it from a theoretical perspective.  I was doing more reading of books on autism, reading more on-line information about various approaching to teaching and learning in autism, and waking up mornings enthused to try new things.  In reading some about the rapid prompting method of teaching kids with autism (RPM), although I haven't yet researched it deeply, I was struck by how the kids are taught facts and information, not just building blocks of learning or emotional things.  One night, when looking out the window with Janey at night, I started telling her about stars, and how they are faraway suns.  I wound up talking to her about astronomy for a long time, while she seemed to be listening eagerly.  I had the feeling, as I have so many times, that I had hit on something important, that I would do things differently from here on in.

And then---Janey has a day when she screams all day, when she cries without ceasing, when she hits us or tries to bit us over and over.  She has a night where she wakes at one in the morning and never goes back to sleep, while she endlessly repeats lines from videos or songs.  She has days where her only words are "Snuggle on the bed!" and when I lie down to do so, she is calm for just a moment and then kicks me, hits me, screams.  She has days where she constantly reaches into her pullups and smears...well, you get the idea.  She has the days that try our souls.

Maybe other people are better at this than me, but when Janey has days like that, the theories go out the window.  It's very, very hard to feel hopeful and ready to try new things when you haven't slept, when you are in pain from repeated hits or kicks, when you are spending your days cleaning up tough messes.  It's hard to wake each morning ready to test some exciting new theory when the day before was what most people unblessed with a child like Janey would consider the toughest day of their lives, but which for us was just another long, long day in a series that stretches back years and into the future for...the rest of our lives.

I think this kind of weariness is why schools are better at staying consistent with behavior plans or teaching methods.  The teachers are extremely devoted to the students, but they know the day ends and they go home, they know the week will be over in time and they will have a weekend, they know summer always comes around.  For parents, that is not the case.  It never ends.  And when a child has been screaming for hours, when you have been hit over and over, when you haven't slept well in nights---well, I guess it takes a stronger person than I am to still calmly follow a particular theory or teaching method.  For me, it takes the energy I have to just try my damnedest to calm Janey down, to keep her clean and fed, to get her to sleep.  And to meet the needs of my other children, to keep dishes and laundry from taking over, to be an approximation of a functioning human being.

If....if Janey didn't have the extreme behaviors...if she were still just as affected by autism and learning issues, but she was more the unreachable kind of autism than the behaviorally challenging kind...well, I think I'd do pretty well.  That is where the image people have of God somehow handing out kids to the ones who can best handle them breaks down severely.  I feel like my strengths as a person and parent are not matched well to being Janey's mother.  I do the best I can, but I simply don't have the energy, physical or mental, to be the type of parent that would be best for her.  So I muddle along.  I get from day to day.  And over and over, screaming trumps theory.

Thursday, April 2, 2015

World Autism Acceptance/Awareness Day, through my own Janey lens

Well, here it is again, that day that I am sure is like Christmas for all of you out there---World Autism Acceptance/Awareness Day!  All sarcasm aside, sometimes I'm a little glad there's a day of the year set aside for autism---a day that is about what every single day is about for my family and me.

I thought I'd write about Janey's afternoon yesterday.  It illustrates the best and the worst of how autism affects Janey, and therefore affects our family.

Pictures I took this morning of Janey
Janey got off the bus in a fairly cheerful and mellow mood.  She was happy to find some chips to eat, and we had a quiet and companionable half hour as she ate them next to me.  Freddy got home then, and Janey was happy to see him.  Her hands were covered with chip dust, and he said if she washed them, he'd take her to the ice cream store, as she had asked (as she asks every single day after school).  After a few reminders, she washed them like a champ, and he kept his promise and took her to the store.  They both came back in great moods.  Freddy remarked on how very good she was, and how much fun they had.  The ice cream store (as most of you know, actually a corner convenience type store) is only a few houses and then a few businesses away from us, on the same side of the street, and now as we pass our neighbors' houses, we no longer have to hold Janey's hand.  She loves that---she skips along singing.  We take her hand again by the gas station, as Freddy did yesterday.  It was great seeing what a good time they both had, and Janey ate her ice cream happily.

A nice moment before they left---after Janey washed her hands and Freddy told her he'd take her to the store, she hugged him---her full-on, somewhat overwhelming hug.  Freddy was quite touched.  She is gradually showing more and more of an interest in her siblings, and it was really a nice moment.

Taken within three minutes, they show her changing moods.
So---great afternoon, right?  Well, then it took a turn.  Janey decided to graze the refrigerator for something more to eat.  She found raw turkey meat.  Freddy caught her in time and told her to put it back, and when she came over to sit by me, I said "Janey, you know we never eat meat that hasn't been cooked"  Evidently, that was something she found unacceptable to hear.  She hit me on the nose, very hard.  I grabbed her hands and said "No you don't!" and she lunged hard at me, trying to bite me with all her might.  I yelled to Freddy for help, and he carried her away to a chair and held her back as she tried as hard as she could to bite him too.  Being unable to do that, she kicked over a coffee table by the chair, with Freddy's afternoon coffee on it.  It spilled all over the floor.

Freddy told her, very calmly, that she needed to clean up the coffee.  And so started the 20 minute siege.  She was not inclined to clean up the coffee.  She wanted instead to bite Freddy.  He stayed calm and insistent, telling her to go get the paper towels, which she finally did, after about three biting attempts.  Then, again interrupted with many, many lunges at him, she very, very slowly did clean up all the coffee and threw away the wet paper towels.  By the time that was over, we were all exhausted.  Janey got her iPad and sat quietly and cruised YouTube.

It's not all smiles, so we take them when we can!
And that is Janey---albeit, a rather extreme example of Janey at her best and worst.  That is what we are aware of every day.  That is what we have leaned to accept.  Sometimes it's very easy to accept Janey.  Sometimes, it's very, very hard.  And as I talked about yesterday, accepting doesn't mean liking always, or not liking, always.  Sometimes it means adoring.  Sometimes it means despairing of.  But if I could tell the whole world about autism, I would like them to understand both sides of it.  I don't want a gauzy unicorn and rainbow filled fantasy autism image.  I don't want a horrifying, Autism-Speaks-Style tragic view of autism.  I want people to know Janey, and to know all of your girls and boys, all the many, many faces of autism.  I want them to know the stories, and to know the children we love so much.  Janey, this day is for you.  I love you so, so much.


Wednesday, April 1, 2015

Accepting Autism Acceptance

Tomorrow is Autism Acceptance Day.  You might know it as Autism Awareness Day, but like a lot of others, I have chosen to change the name.  I think most of us are aware of autism by this point.  The next step is acceptance, and that is a step not only for the general public for but many of us personally.  Or at least it is for me.

I struggled for a long time with the idea of autism acceptance. My reasons were many, but there were lots of times I heard that term and said to myself "Never!  Accept autism?  That's not going to happen!"  I always told myself it had nothing to do with accepting JANEY, it has to do with accepting her autism.  However, I think I'm finally there.  I've figured out what autism acceptance means to me.

Autism acceptance doesn't mean liking the tough parts of autism, or NOT liking the great parts.

When Janey bites herself or others, or when she cries for hours on end for reasons we don't understand, acceptance doesn't mean not trying to help her to feel better and stop hurting herself or others.  It DOES mean accepting that those behaviors are part of how autism affects her.  It means not denying the parts of autism that are so tough, not writing them out of the story to make autism more palatable.

When Janey is delightful, amazing, hilarious, autism acceptance doesn't mean that I can't enjoy the positive effects of autism.  I don't have to say "Janey is wonderful DESPITE her autism".  I can say "Janey is wonderful partly BECAUSE of her autism"  That's a tough one for most people to take, somehow.  But when Janey recites dialogue amazingly well, when she learns songs instantly and sings them so well, when she snuggles us without the typical pre-teen reserve---I accept that those behaviors are part of her autism, and I love them.

Autism acceptance applies to ALL parts of the spectrum.

This year, when the press decides to showcase people with autism, I wish for every Temple Grandin, for every child that has written a book or learned to type and give us all insights into their world, they would also showcase a child on the lower end of the spectrum, like Janey.  I don't accept Janey conditionally, and I dream of a world that doesn't accept people with autism because they have or might someday do something amazing.  Janey and and the children of my friends around the world with a child with low-functioning autism deserve to be accepted and to have their lives made as meaningful and joyful as possible.

Autism acceptance also applies to acceptance of a family's choices

It is very hard to see how fragmented and politically correct and potentially trigger-filled the world of autism is.  Part of what I think we all need to accept is that we've all made different choices in how we deal with the autism.  Some people embrace ABA.  Others do Floortime.  Others have put their children on special diets.  Some use vitamin supplements.  Some use medication.  Some homeschool.  Some have children in residential placements.  There are an amazing number of ways to educate and medicate and provide therapy to children with autism.  We might feel strongly our way is the best, but we need to accept another family might not feel that way, and as long as we all have the goal of helping our child live a happier and healthier life, these issues should not divide us.

I will close with a video a lot of you have already seen, as I put it on my Facebook page.  It's Janey surprising me with a different message than the one I asked her to give---I asked her to say "Happy Autism Acceptance Day!" but her Boston and 1/8th Irish got the better of her!  She also says in the video "I have autism"  I love her sweet voice as she says that.  I used to avoid using the word "autism" around her, but I have decided that's not at all what I should do.  I accept Janey's autism as part of the amazing little girl she is.  I love you, Janey.

Here's the video!


Saturday, March 28, 2015

When inclusive isn't inclusive---the cheery camp booklet

Last week, I went to a presentation at Janey's school, about summer programs, given by people from an autism program at a local hospital.  I hesitated to write this post, because I don't want to put down the people who gave the presentation.  They were earnest, well-meaning and caring.  However, I left feeling like, frankly, their whole presentation had been a waste of my time.


The people from the hospital had made up a very colorful and cheery summer guide.  They made sure we noticed the cute clip art, the little asides and pictures and all.  The core of the guide was a list of 12 camps.  Almost all of these camps were called "inclusive".  A few, instead, were listed as being (and I quote directly from one of them) "for individuals with high functioning disabilities".  One of them said it was for "children with special needs", but then right under that, said "1:3 counselor to child ratio"

As the presenters went through the camps, I felt increasingly depressed.  None of the camps would be a possibility for Janey.  She isn't able to be "included" in the way meant by the camps.  The peppy social stories and advice on talking to counselors would not make her able to attend the camps.  A one to three ratio would never, ever, ever work.

I debated mentally whether to say anything to the presenters about my thoughts.  I know that children in the autism program at Janey's school have a spectrum of abilities.  I am sure many of them COULD go to these camps, and so I decided to keep my mouth shut, to let them get the benefit of the presentation.  Thankfully, one of the autism program directors from the school spoke up and asked the question I had been so much wanting to.  She explained that some of the children in their program had very high needs, and asked if any of the camps on the list would be able to handle that.

The presenters were a little flustered, I think.  They said no, the camps probably wouldn't to able to handle that.  The woman from the school asked if they knew of a camp that could.  They mentioned a camp that "might be able to".  I then spoke up and asked about why that camp wasn't on the list.  They looked at each other uncertainly and said they weren't sure why---that maybe the camp wasn't really for autistic kids.

I am not trying to be mean to these hospital employees.  I don't blame them.  I don't blame anyone, really.  But the guide they gave, and their initial "There's so much out there!" vibe are part of a huge problem.  There is a giant divide between what one of the camps called "high functioning disabilities" and Janey's type of disability.  The general public doesn't, for the most part, understand this.  They might look at a booklet like the camp one and think "Wow!  I almost wish MY child had special needs!  Why do these people whine so much?"

Fortunately, Janey DOES have a summer program.  She goes to summer school right at the same place she goes to winter school---at the public school she attends.  Kids with a very high risk of slipping backwards during the summer get summer school, by law.  The law doesn't say how MUCH summer school they get, though.  This summer, the school will be only 4 days a week, for 5 weeks.  20 days.  The summer has a lot more days than that.  Just a few years ago, the program was 30 days, but I guess our kids, our very high need kids, are not a budget priority.  I wonder if someone up there in the decision-making office thinks "Well, there's plenty else out there for them to do in the summer!" while looking at the same cheery little booklet I am.

I want to end this with a huge, giant, heart-felt thank you to the teachers, aides, program directors, ABA therapists and more that work at Janey's school (and those who worked at her old school and worked for so many years to practice true inclusion).  They don't get the glory, but they are the ones that truly do accept everyone.  Inclusion, in my new thinking of the word, means being able to say "Yes!  We welcome your child!  We will meet their needs!" And it matters to me really not at all if this is in a classroom or camp with no "typical" kids at all.  I'd rather have her accepted than not included in "inclusion"