What drives us up a wall

After many years of this autism parenting gig, we can be pretty unfazed by most behaviors Janey shows.  We get the reasons behind them, more and more, we understand they are ways for her to communicate, or sometimes, we know they are just teenage behaviors, not autism behaviors, and we try not to take them personally.  But we are human beings, as all of us are, and there are still things that Janey does that are highly trying, to say the least.  Here's some of them...

Screaming

When Janey is very displeased, she screams.  If you've never heard her scream, you probably will have a hard time picturing just how loud it is.  I'm pretty unbothered by most loud noises, but when she screams right in my ear, it's painful.  She screams so loud that I'm very sure people on the sidewalk and perhaps even people in other states can hear her.  It's an incredible scream, and nothing we say or do seems to stop it.  I think she's figured out it's a weapon---something she can do that we can't do a thing about that certainly gets our attention.

"I need help!"

Of course, if Janey really needs help, we are happy to help her.  But usually, this "I need help!" doesn't really mean she needs help.  It means she wants us to stop whatever we are doing and participate in a ritual she wants performed.  Often, it's changing a TV show.  If she really couldn't change the shows, that would be one thing.  However, she can change shows with complete ease now when she wants to.  The other night, as Tony dozed and I watched from the other room, Janey switched shows around for hours, going from one streaming service to another, switching the TV into internet mode and back, rewinding and fast forwarding, changing shows probably a hundred times.  When I came into the room, though, suddenly she needed help doing the most basic TV action.  I get it...she wants or needs attention, or she somehow can't access the part of her brain that knows how to make the changes.  But that doesn't make it less irritating at times, especially when we hear the "I need help!" phrase every minute for hours and hours.

"You've helped me, now go away!"

This comes up most when Janey asks us to snuggle her on her bed.  What this means is for us to cover her with her comforter, get her pillow (the comforter and pillow are always thrown onto the floor by her when not in immediate use, no matter what), lie down with her for a millisecond, and then..."want to go away?"  Once we've done our part, we are no longer supposed to be there.  Which I get---a 16 year old girl doesn't want her parents around all the time.  But after a few minutes on her bed, Janey will get up, watch a little TV or eat a bit, and then want, once again, to snuggle on the bed.  And we are supposed to, again, lie down with her for a second and then go away.  Often, this happens after a night when she didn't sleep.  Once we get on her bed, we want nothing more than to just close our eyes for a minute and rest, but no---we must hop back up and wait for the next summons to lie down.  If we refuse the routine, which we often try to do, the scream comes out, Janey is in a mood probably for the rest of the day, she makes the demand far more often...it's usually just not worth it.

"Go for a car ride?"

Janey's favorite thing on earth is going for a car ride with Tony, a car ride usually to nowhere, just a ride around listening to music.  Tony takes her for rides like this two to three times a day, every single day.  The rides are around an hour each.  So she gets LOTS of car ride time.  But it's never enough. Often, the minute they are back in the driveway, Janey immediately says "Go for a car ride?"  There's no credit for the car ride just completed.  And the car ride requests are not changed by weather conditions, the fact it's the middle of the night, or even the rare occasions when Tony has taken the car elsewhere and there is literally no car to have a ride in.  And like the other requests, us saying no brings on, always, a predictable series of reactions---screaming, arm biting, sometimes throwing things or smashing her fist into things.

"Music please, music!"

Janey loves music.  She always has.  But she doesn't just like any music.  She has very specific tastes, tastes that change from time to time.  Like any of us, she gets sick of certain songs after a while, or discovers something new, or just wants something different.  Unlike the rest of us, she often isn't able to tell us just what it is she wants.  This comes up the most in the car, and affects Tony far more than me.  Tony will be playing Sirius Radio, or Accuradio, or music he has on a thumb drive, and Janey won't like the song that's on, and she'll say "music please, music!" which means "change the song"  If Tony doesn't immediately comply, she repeats the phrase, much louder.  If he doesn't comply after that, she will kick his seat, scream, generally freak out.  Some days, she's listen happily for a long time to whatever comes on (and Tony does his level best to play playlists she likes---her favorite by far is any British Invasion music), but other days, the "music please" is continuous, stopping songs after just a second or two, over and over and over.  I think that's when she wants a certain song, but can't express it.  So she just hopes it comes up, and of course, with many thousands of songs out there, it's not likely to.  We've tried having her control the music via smart phone, but she won't do it.  It's Daddy's job.

There's more I could add to this list, but those are the big ones.  And thinking about them, they are much more annoyances than things that used to happen.  For the most part, she doesn't lash out at us or herself like she used to.  There can be hours and sometimes days when she's perfectly happy, and none of these behaviors show up.  But I'm not going say it's easy.  I'm not going to lie.  It's still tough, in a lot of ways, being Janey's parents, and tougher this year than ever before, without school as a respite for us and a change of scenery for her.  

I'd be so interested to hear what would be on all of your What Drives Us Up A Wall lists!

So far, not so good

School has been closed here in Boston for almost two weeks.  From what I've read, school is closed almost everywhere in the world, certainly almost everywhere in the US.

How's it going?  For us, not well.  Janey is very, very unhappy without school.  

We've wondered, during the last 2 or 3 great years, with this year up until the pandemic hit being the best of all, what was contributing the most to Janey's vastly happier mood.  Was it just her maturing?  Was it something we were doing differently at home?  Had she been in pain somehow, and now wasn't?  Or was it school, school she loved?  I'm sure it was some of all of those, but I think these weeks have shown the biggest part of it was school.  

For Janey, being social and connecting to people has always been one of her strengths.  This is especially the case with adults.  She forms strong connections to the people in her life.  She has special rituals and routines with each person she is close with, ones that are very different for each person but that she never forgets.  She lets people know strongly how important they are to her.  Being suddenly removed for all the people at school she grew so quickly to love very much is tearing her apart.  It's not that she doesn't love us at home, but honestly---what 15 year old would want to spend all their time at home with their parents?  Not Janey.

We're seeing behaviors we haven't seen in a long time.  Janey is biting her arm all the time, something that never has quite gone away but for years has been more like a gesture than an actual bite.  Now it's a bite again.  She is screaming, a lot, the very loud and anguished scream we knew so well but had heard so much less of lately.  She isn't sleeping. Last night she slept almost not at all, she didn't nap today, and at 10:30 at night she's still awake.  Her OCD has kicked into high gear.  She's obsessed with the pillows on her bed---rearranging them, asking for them and then throwing them, wanting us to lie down with her but then insisting we not have a pillow.  She tries to push her brother William out of the room every time she sees him---not that she doesn't like him, but he has become somehow something that needs to arranged also.  She is falling apart in a lot of ways.

And of course, it's nobody's fault.  There is nothing that can be done.  The schools are doing what they can remotely, friends have asked if there is anything they can do to help, we would buy or get anything that would make this easier for her, if there were anything.  There isn't.  We can't recreate school for her---the dance classes, the long bus rides, the morning meetings, the wonderful people who work with her, sing with her, have fun with her.  

There are resources being put out there for all the homebound kids all the time, but as is so often the case, they mostly don't work for someone like Janey.  She doesn't do academic work.  Online learning is not something she can access in any real way.  She has always rejected any time of virtual visual contact---I've tried any time I've been away for a day or two to Facetime her, and she hated it.  We try to follow a routine, but we run out of things to fill the routine with fast.  A big part of her routine at home has always involved things like going to the grocery store, or visiting her uncle in the nursing home near us, or going to the "ice cream store", the nearby 7-11, or other little local trips.  We can't do those safely or at all.  For a while, I was taking Janey with me each day for a walk to the post office.  But she compulsively touches everything---the walls, the lampposts, parked cars---and without literally holding down her hands, she's going to touch her face.  So we do car rides to nowhere or stay home.   

We will get through this, of course.  School will start again in time.  But what scares me is how easily all Janey's progress can dissolve.  I worry about when she turns 22, and is no longer in school.  I worry about budget cuts or administrative decisions that might change her school experience.  I worry the black hole of worries the most---about us as parents not being here on earth to care for her.

And due to some awful articles I saw and had to stop myself from reading, I worry about how society makes judgements when there are limited resources to keep people literally alive.  I worry about medical care that might not be equally available to all.  I worry about all people that are seen as less than.  I think of all the children like Janey I know through this blog, around the world, and I worry so much.  I hope you are all healthy, most of all, and finding ways to get through this. Love to all of you.

Luck and Joy

Janey's annual IEP was last week.  For some reason, I was feeling edgy about it.  I don't know why.  It's about the 30th IEP I've been to as a parent, and there wasn't any big issue I needed to address. 

When the meeting was over, I realized what I think had been getting me worked up.  It was the feeling that somehow I SHOULD have something big to insist on or ask for.  And I didn't.  We left the meeting extremely pleased with all we had heard.  We are so lucky.  Everyone there is truly on Janey's team, not just in name but in reality.  They love Janey.  They get a kick out of her.  They see her as an interesting and valued person.  And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.

A joyful reunion

One great piece of news from the meeting is that Janey's teacher will have her again next year.  7th and 8th grade at her school works that way, I found out.  I adore Janey's teacher.  She is absolutely wonderful.  I loved hearing her stories about Janey---stories that showed she knows how to encourage Janey to do her best while still respecting her for who she is.  The OT at the meeting was terrific too.  One thing she said that really stuck with me was that she laughs 10 times during a session with Janey.  I love that attitude.  Janey can truly be a lot of fun to be with, if you get her, and the people at her school get her.

It was a very nice weekend last weekend.  Freddy was home all last week from college.  Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this!  I can't believe this!"  I could tell by the sound of his voice that something very unusual had happened.  He sounded shocked---almost scared.  I jumped up and saw, coming through our door, my older son William!  He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise!  He wanted to give us a shock, and he did!  He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.

That night, we ordered takeout, and were all eating it together in the living room.  It struck me something seemed different, a little off.  And then I realized what it was---Janey was just sitting and eating and being part of the crowd.  She wasn't crying, she wasn't making demands, she wasn't needing extra attention.  We were just chowing down as a family like we love to do.  It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.

I wonder often---if someone was viewing us from outside, how would they see things?  I know, in reality, there are still many, many times in an average weekend that Janey gets very upset.  There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on.  When I look back on a weekend, though, those times sort of get edited out now.  I think we can do that because unlike in the past, they don't last for long.  She gets upset, we deal with it one way or another, she settles down and it's fine.  It's a combination of things.  We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.

Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older.  I think a lot of it is acceptance.  If I put things in a negative way, I could say it's also giving up on certain things.  We don't feel much sadness or despair over what Janey can't do, most of the time.  She is who she is.  We don't expect her to never get upset, never scream or cry or bite her arm.  We know those times are part of her, just like the times she dances and sings and laughs.

As William was getting ready to go home yesterday, he remarked on Janey.  He said "You know, overall lately she's a joy"  You should have seen her when she saw William at first.  She was overcome with happiness to see her big brother.  At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat.  William has been here for all of it.  Hearing him say that---it meant a lot.  Freddy said similar things too.  She is lucky to have the brothers she has, and they are lucky to have her.  And we are lucky to have all three of them.

Pulling the plug on summer school

I decided yesterday to not send Janey to the rest of summer school.  There wasn't that much left---just the rest of this week and then next week, seven days.

The decision wasn't actually that tough to make.  Janey had been consistently resisting getting on the bus every morning.  Waiting for the bus had become rather hellish most days.  Through no fault of the bus driver, the times the bus arrived were very varied.  So we had to get outside well before it arrived some days, while other days, it showed up almost right when we started waiting.  The days it didn't, though, Janey did everything in her power to go back inside.  

Yesterday morning was the worst, although the bus arrived quite early.  But before it did, Janey screamed a lot, bit her arm over and over, and then almost bit me, with only a quick jump aside on my part keeping her from doing so.  Right after that, the bus showed up, and she got on.  She always got on like a stoic once the bus did arrive.  

I had my annual physical yesterday morning.  When I got back, there was a call on the machine from Janey's summer school teacher.  I called him back, and he said that day and the past 4 or 5 days of summer school had been very tough, with Janey screaming a good deal, and he wanted to know if anything at home had been different, like Janey's eating or sleeping.  It hadn't been, but in a rare case of me deciding anything on the fly, I realized this just wasn't all worth it, and I told him I'd decided to keep Janey home for the rest of the session.

When Janey got home, I told her summer school was all done.  She didn't really react, but a few minutes later, she came up to me and hugged me---a huge, tight hug, the kind we almost never get from her.  She didn't let go for a long time.  I'm pretty sure that was her reaction.

The whole summer school debacle brings up a couple issues for me.  One is how it's really impossible to find out from Janey how things are going when she's not with me, and the other is the lack of activities truly open to Janey in the summer (or year round, actually)

When it became apparent this summer that Janey wasn't eager to go to summer school, I tried hard to talk with her about it.  But asking Janey questions is next to impossible.  She never answers open-ended questions like "How is summer school?".  Never.  If I give her choices, like "Is summer school good or bad?", she picks one of the answers randomly, usually the last choice given.  If I give her starter sentences, like "At summer school, I feel...." she will occasionally fill in the blank, but she does so with what she thinks is the "right" answer, not what she actually feels.  For example, she can be screaming her head off, and I say "right now, I feel..." and she will say "Happy" 

I am grateful the Boston schools offer the summer programming they do, but from what I have been able to gather over the years, it's very different than "winter" school.  It's also very much school, not camp.  It is aimed at maintaining academic progress.  The class sizes are much bigger than during the regular year, and the schools are held in whatever building has air conditioning.  Unlike most summer programming for most kids, there isn't really much of a fun component.  So for Janey, it basically is all day in a room with a lot of other kids (based on the kids on the bus, pretty much all other boys), working on academics, which is not something she is good at or enjoys.

The thing is, there's very little in the way of alternatives.  Yesterday at the doctors, I saw a magazine that had a headline "The importance of special needs summer camps" and I gave it a look, just to crack myself up.  As I figured, they were the same old options, camps that in no way would accept Janey, camps that pride themselves on "inclusion", if by inclusion you mean that if your child can pass as not having special needs, they are happy to have them there.  They are not camps for someone like Janey.

And of course, it's not essential someone goes to camp.  I personally hated camp, the few times I tried it.  Summer was freedom, a time to do what I wanted, to spend time with friends, to walk through the little woods across the street from me that led to the harbor where I spent much of my time, swimming and watching birds and reading.  Summer was playing double solitaire with my sister while we listened for our favorite songs on the radio.  Summer was walking the three miles into town to buy penny candy.  Summer was sleeping outside in our woodlot.  Summer was working in my mother's store, and using the money I earned to have my father bring me home a Mister Misty Float, and going outside with a book and making that float last for an hour.  Summer, although never my favorite season, was many things when I was Janey's age, and none of those things are things Janey can do.

In two weeks, Janey will be 13, a teenager.  Instead of her world getting bigger, as mine did as I got older, Janey's world seems to get smaller as time goes on.  Playgrounds and spray parks  don't much welcome a child who looks like an adult among the little ones running around.  Janey can't walk alone to the store for candy, and she probably never will be able to.  She has no friends.  She is not going to spend the night with her friends, laughing until way too late, like I did with Laurel or Marie or Julie or Wendy.  She isn't going to play double solitaire with her sister all summer only to realize that said sister was using a totally different set of rules, and that was why Carrie always won and I always lost, and still, remembering those games during which we hoped uncoolly that the latest Barry Manilow or Dan Fogelberg song would come on WABI, the uncool radio station,  is one of my favorite memories.  Janey's life is very limited.  I know that I'm supposed to think of the bright side, to think perhaps she doesn't see it that way, but today, I am feeling like in many ways, that is a tragedy.  

Arm Biting

One of Janey's most consistent challenging behaviors is her biting of her own arm.  It's always her right upper arm.  She raises it to her month and bites the same spot.  It happens any time she is upset, and many times when she's not really upset, but overexcited or wound up in other ways.  The bite varies a lot in strength.  It can range from almost more like sign language with no real biting at all to actually biting down very hard on her skin.  She almost never breaks the skin, but she bites hard enough so she has a permanent hard area of callus where the teeth hit her arm.

The biting started quite suddenly when Janey was around eight.  One Friday, she came home from school with a bruised area on her upper right arm.  We had no idea what it was from until she got upset that weekend and started biting herself right where the bruise was.  From that point on, it's happened at least once a week, sometimes once a day, or hour, or in the worst times, a minute.

I think the biting is sometimes a release, a way to let off tension, and it's sometimes a way to communicate anger or annoyance at us.  When it's mild, I can see just ignoring it or using it as a starting point for discussion---"You are biting your arm.  Do you feel angry?"  However, when it's more severe, it truly hurts her.  This past weekend, when she was crying, I asked her if something hurt, and she said "Does your arm hurt?"  When I asked her to point at the hurty place, she pointed right at the biting area.  It made me feel a huge wave of sadness, thinking about her causing herself pain.

I have very few ideas for stopping the biting.  We've tried a lot of things---an ace bandage over that part of her arm, calling her attention to the biting and asking her to stop each time we see it, behavior plans here and at school, any number of millions of different bite toys, chewable jewelry, fidget toys, even bite-able toys meant for dogs.  Nothing stops the biting.  It seems like part of the whole routine for her is feeling the teeth on her skin.

Why does Janey bite her arm?  I have some theories.  One is that she learned she couldn't bite other people.  It's sad to think she then turned to herself.  If she feels angry enough to bite, and she knows biting other people will cause a big huge scene she wants to avoid, she bites herself.  In thinking about that, I've tried a few times making a big scene when she bites herself, but that hasn't seem to work at all.  Another theory is that the biting has become a habit, like nail biting or hair twirling or something.  But it doesn't happen when she's just bored or doing nothing else.  I've never seen her bite when she wasn't at least a little upset.

Searching the good old internet for ideas about biting is as often not that useful.  It so often seems everyone giving advice goes to their own corner and gives advice based on their own theories.  And often, the "expert" advice seems to assume that the parents have never tried a thing.  Ignoring her?  Figuring out the cause of the biting?  Giving her something else to bite?  Gee---neither her school or us have ever thought of anything like THAT!  It's very frustrating.

A problem with the biting beyond it hurting Janey is that it seems like self-injurious behavior is where a lot of programs draw the line at working with kids.  It's one of the most common questions I've seen on screening-out type applications.  And I can understand that.  It's a scary, awful thing to see at its worse, and I am sure sometimes there's also a worry that we as parents will think that Janey was somehow hurt by someone other than herself.  But it leads to more isolation.

Like with so many other areas of autism, we just keep doing what we can do about the arm biting.  We cobble together various ideas.  We try to keep her happy, which is the best way to keep her from biting.  We talk to her about it, and hope she understands some of what we are saying.  We work hard to calm her when she's upset or overexcited.  And we offer our ears, ideas and thoughts to anyone else dealing with seeing a child they so love hurt themselves.

Summer school and some thoughts

Janey started summer school this week.  I was nervous about summer school when I found out she would be going to a different school than she does during the regular school year.  This is because she's technically in 6th grade now, and her regular school only has an elementary school summer program (although it goes to 8th grade during the regular year).  She is attending a middle school a ways from our house.  There was an open house last Friday, and we took Janey.  After going to the open house, I no longer felt nervous at all.  We found out Janey's teacher was going to be the husband of one of the most wonderful people we've ever had work with Janey---an ABA supervisor whose known Janey for many years and is the person who actually visited her in Rhode Island when she was at the hospital there.  Any husband of hers was okay with us, and he seemed great---like someone who would understand Janey and like working with her.  We also met the ABA therapist assigned to her for the summer, and she knew Janey from way back at her original school, and seemed great.  The administrator of the program met us as we came in, and was enthusiastic and very good with Janey. It was a huge relief to meet them all.

For the first time ever, I think Janey was truly looking forward to summer school.  I don't mean just it was the first time she looked forward to summer school, but the first time she's understood enough to look forward to anything.  She woke up excited on Monday, and when I asked her "are you happy you're going to summer school today?" she smiled hugely and said "YES!" in an emphatic voice.  She wanted to go out and wait for the bus about two hours before it was due to arrive, but I held her off until about 20 minutes early.  When the bus came (on time!) she jumped on with complete confidence.  I love it that all three of my kids don't seem to suffer from the social anxiety I have.  None of them has ever had much trouble separating from me.  I thought about how I would have been at age eleven in Janey's position, going to a new school.  I would have been a wreck.  I don't think it's Janey's autism that makes her different than me in that way, at least totally.  It's her personality, and I love that about her.

In thinking about this past week, I kept thinking about WHY things seem easier now.  It's partly because they ARE, but if I take any day this week, I could find examples of very tough behavior from Janey.  There's been screaming, the loud piercing scream.  There's been arm biting, lots of it.  There's been "toileting incidents".  There's been hitting of Freddy, who seems like her go-to person when she is angry.  There's been obsessive changing of TV shows, and meltdowns when I didn't understand what she wanted.  There's been, in fact, most of the behaviors she's had all along.  But if I thought of the week in a quick summary in my mind, I'd say it's been a very good week.

I think two things make life seem easier now.  One is duration.  The behaviors happen, but they don't last all day, or usually very long at all.  They happen, intensely, and then Janey recovers.  The other thing is perspective, our perspective.  Not that I want to think we ever DIDN'T accept Janey, but now, it's a different kind of acceptance.  Janey is who she is.  It's hard to explain, but I'm starting to see that parents of autistic kids are often made to feel that their kids are somehow fixer-uppers.  They have potential.  They need to be remodeled extensively, and then, they will be livable and valuable.  More and more, that kind of thinking is bothering me a great deal.  NOBODY is a fixer-upper.  That doesn't mean we are all perfect, if you see perfect as some ideal that doesn't exist.  It doesn't mean we don't need to work on helping our children, ALL our children, learn to live in society.  But in accepting that Janey is not some project, not some house that needs to be gutted and remade, we can also accept that there's going to be screaming, there's going to be arm biting, there's going to be times that are tough.  They don't last forever, and there are also times that are great.  I'm not pretending that the challenges of autism are easy.  They aren't.  I'm not saying that Janey is not, overall, more of a challenge to parent than most kids.  She is.  She is very, very challenging, often.  But all that doesn't make her less of a complete person.

Now I will go and try to explain to Janey why Netflix no longer carries "Hercules", and try to calm her meltdown over that.  I am tired of the daily battle over that issue, but it will pass, and it's part of what makes Janey Janey, the Janey that fascinates, frustrates, confuses, intrigues and captivates me, like her brothers, like all kids.

Fourth of July

 Happy 4th of July from Toledo, OH!  It's been a wonderful vacation so far.  The best part, of course, has been getting to meet my friend Michelle and her family in person.  Michelle was the first friend I made through this blog, and her support, advice and friendship over the years has meant more to me than I can say.
 
Lindsey is Michelle's 16 year old daughter, a girl who is much like Janey.  What a remarkable and cool person she is!  She is non-verbal, but that certainly doesn't mean she can't communicate!  I think she said more to me in the first 10 minutes I was with her than many people do in a year.  Her facial expressions and postures and attitude are astonishingly able to say what she wants to say.  One of the coolest things was watching her watch Janey have  a meltdown.  She said with her face "I love this!  Janey is giving them hell!  And it's not me---I'm just getting to sit back and watch!  Go, Janey!"

It's been terrific meeting Michelle's husband, too.  Fathers of our girls are the unsung heroes, and Dan is one of them.  Like Tony, he is fully there for his family, and Janey has taken to him instantly.  And Leah and Jacob, Lindsey's siblings, are amazing kids in their own right. 

And Michelle!  I think we could talk forever and never run out of things to say.  She has lived my life and I hers.  The cool thing for me is she's a little ahead of me in the journey, as Lindsey is older.  When she told me that it would get easier with Janey, I knew she really knew.  She gets the meltdowns and the isolation and the frustrations but more than anything, the love we have for our girls---the overwhelming love.

How has Janey been doing?  Pretty well, overall.  There have been meltdowns and arm biting here and there, and when she's gotten restless there have been a lot of walks and car rides, but she has spent a lot of time at Michelle's house, enjoying their hospitality, and we had a great swim this morning, lots of iPad hotel time, and a lot of doing things we do at home, in different surroundings.  It's making Tony and me feel hopeful that when he retires and we can travel even more, Janey will be up for it.

Today we are going to the Toledo Zoo.  One of our dreams for Tony's retirement is traveling around to some of the top zoos in the country, and Toledo's is one of them, so we are very excited!

 Toledo is great!  The weather has been so lovely, dry and warm but not hot.  The big Ohio skies and farms and friendliness make me proud to be an Ohio native, although Maine of course will always be the home of my heart!

I'll write more about the trip soon---I don't like writing on a laptop, so I'll keep this fairly short.  I hope everyone has a wonderful 4th!

Screaming

The scream.  It's incredibly loud, and incredibly sad.  It's a scream of despair, of extreme pain, of furious anger.  It will literally hurt your ears, wake you from a dead sleep, startle you into jumping.

Sometimes, it's in response to a request that can't be instantly filled.  Last night..."I want salami!"  I told Janey we were out of salami, and there it was, the scream.  Sometimes, it's during a video Janey has been watching happily for years.  Little Bear has the mildest of mild arguments with Cat?  Scream.  Sometimes, it's out of absolutely no-where we can see.

If the scream made Janey feel better, if the scream seemed to be an effective means of communication, if the scream was a sensory thing that let out steam---I would not try to find ways to stop it.  It would still restrict us from going places, it would still make it sound like Janey was being tortured, but I would accept it.  But the scream doesn't seem to help anyone, especially Janey.  It's almost always accompanied by arm biting---deep biting of Janey's right arm.  The arm has permanent bite marks.  Sometimes, after the biting, Janey says "My arm is hurty!" with tears in her eyes.  The biting, like the screaming, does not seem like a choice.  I am quite sure Janey doesn't want to scream, or to bite her arm.

What do I do about the screaming?  I don't know.  I have tried literally everything I can think of.  Nothing has worked.  We have tried ignoring, we have tried responding to what we can guess is the cause, we have tried a certain place in the house to go to scream, we have tried just hugging her when she screams, we have tried explaining calmly to her that we don't know why she is screaming and we would like her to tell us in words what is wrong.  Nothing seems to help.  When Janey is in a good mood, she doesn't scream.  When she's in a mildly upset mood, she screams at times.  When she is in one of her very, very bad moods, she screams most of the day.

I would do almost anything to help Janey feel better, to make her not need to scream and bite herself.  I would give her my voice, like The Little Mermaid movie she loves.  I would subtract twenty years from my life, as is said in "At This Moment", one of Janey's favorite songs.  I would give up everything I enjoy.  I would pretty much give my life.  That is how much I wish Janey was happier, how much I wish she didn't feel the despair that leads her to scream and to hurt herself.

When it comes to the scream, all the autism philosophies, all the methods of teaching, all the labels and interventions and behavior plans and ideas, all my sanity, they all go out the window.  All I can feel is sadness, sadness that my daughter I love more than anything is feeling the kind of pain that causes a scream like that, a self-injurious bite like that.  This is not something that can be sanitized, can be made part of anyone's agenda.  This is the horror of the child you love needing help you just can't give.  I'm sorry, Janey.