Friday, September 12, 2014

A Tale of Two Afternoons

Janey gets home from school this year at about 2:30.  This is far earlier than other years, when she went to after-school.  I looked into after-school for her this year, and talked to the director, who seemed great, but it would only last until 4:15, and has no transportation.  That would mean I'd have to pick her up, as Tony would not be home yet, and driving out into Boston traffic at that time is not something I want to do.  So for now, Janey has the afternoon at home.

Mid to late afternoon has always been the toughest time of day for Janey.  I think she gets tired by then, due to her poor sleeping, but she doesn't nap.  She has used up her day's reserves of holding it together.  Daddy isn't home yet, and I am tired too.  If she hasn't eaten well, she's hungry.  Her medication is wearing off.  There's tons of reasons, and they all combine to make around 3-5 pm the most likely time of the day for meltdowns.

Monday, Janey got off the bus ready to explode.  She ran to her bed and flung herself onto it, something that looks like a teenager to me and almost makes me laugh, if it wasn't usually the start of trouble.  I went over to her and did my afternoon bit "I'm so happy to see you home!  I missed you a million!  How is my sweetie?  How was school?"  As usual, she doesn't respond.  Her pull-up was very wet, and so I started to change her.  When it came time to put another pull-up back on, she threw a fit.  She ripped the new pull-up.  If any of you have priced pull-ups for kids 8-14, you know they cost close to a dollar each.  So we discourage ripping.  I said "You don't have to wear a pull-up right now, but you have to wear some pants"  Janey decided she didn't want to.  She let me know this by starting to scream and grabbing my hair and pulling as hard as she could.  It took all my strength to get away from her.

I'll spare you all the details of the screaming, hair pulling and flinging about of things from that afternoon.  Suffice to say it was one of the longest two hours of my life.  When Tony got home, I was beyond discouraged and tired.  Janey was screamed out.  She looked burnt out, glassy-eyed.  So did I.

The next afternoon, I got her off the bus and braced myself.  She didn't look at me as she walked in.  She went straight for her computer, and started watching You-Tube videos.  On impulse,  I said "I'll be here reading if you need me".  She didn't.  For the next few hours, we barely interacted.  A few times, she went to get a snack and needed help cutting cheese or opening a jar, and I helped her, but we barely talked.  The house was quiet.  About an hour into the afternoon, she came over to me and said in a fast and odd voice, one I hadn't heard before from her, "Need a new pull-up"  I changed her as quickly as I could, without comment.  She gave me a look I won't forget soon---a look that said what she couldn't say in words---that she was thinking of the day before and glad we were doing this day differently.  When Tony got home, prepared to see us both as shells of ourselves, he was amazed we both looked rested and happy.

So what's the message?  I don't know for sure.  Whenever I think I've figured something out with Janey, I realize I haven't, so I'm reluctant to draw many conclusions.  But on Wednesday and Thursday, I took the same approach.  I kept things as quiet and low key as I could.  I interacted with Janey only when she requested it.  And we had great afternoons.

I keep thinking back to how I often greet Janey.  I do what I did for years with the boys.  I overact.  I truly am happy to see them after school, and I want them to know that.  I shower them with attention.  I think the boys liked that.  But the boys are different people than Janey.  Maybe it took me until now to really understand that isn't what Janey wants.  She has had an intense day at school, and she wants what a lot of kids want---to kick back, do her own thing and have her mother stay cool.  Every kid is different.  What Janey wants or needs, regardless of her autism, is not what William and Freddy want or need.  So for now, I'm going to back off in the afternoons.  No more dramatic greetings or smothering attention.  I will play it cool, and we'll see how that goes.

Wednesday, September 10, 2014

Meeting Janey's school team and feeling lucky

I had a meeting today with Janey's teacher, her ABA therapist, the ABA supervisor and the director of Janey's section of the autism program.  The school arranged the meeting just to let me get to know everyone, to put names with faces, and to talk a little about their behavior plan with Janey.

After the meeting, I had a feeling that has almost always been my feeling after any meetings at any school my children have attended---a lucky feeling.  A feeling that I am extremely fortunate in having schools, teachers, therapists, aides and administrators that are dedicated, caring, professional and intelligent people.  I don't take that for granted.  I know that isn't the case with every school or district everywhere.  But it's been my experience over the 17 years I've had dealings with the Boston Public Schools, with very, very few exceptions.

Last year was a tough one.  I didn't want to move Janey from the inclusion school she attended, the same school her brothers had attended.  That school had recently been expanded to include preschool through high school, which in Janey's case would have meant until she was 22.  Just after that, we were faced with the fact that Janey needed something more than her school could give her.  She needed to be in an autism-only classroom, in what the Boston schools call an autism strand, where she could have the supports of not just a teacher but a whole staff devoted to autistic kids.  I resisted the change, but I knew in my heart it was the right thing to do.

Janey's new school is very big.  The autism program is only a part of it, with around 19 autism classrooms.  The K-8 school has around 800 students total.  Her old school was about 220.  That was a huge change.  But I'm gradually feeling a little more at home there.  It will probably never feel quite as much like a home away from home as her old school did, but what is important is how Janey feels, and I think she feels at home there.

I saw Janey for a minute today.  Her class was going to lunch (crazily early, at 10:30!)  She was in line, holding her water bottle and looking like part of the crowd (except for being a girl---there is one other girl in her class, but as will probably always be the case for Janey, the class is mostly boys).  She came over to see me for a minute, and I hugged her and said "You need to go with your class now" and she cheerfully did.  That was the routine.  That was the plan.

We talked a lot about Janey's screaming at the meeting.  I loved it that everyone wanted to deal consistently with it, and that they did understand that it's almost impossible to see what triggers the screaming.  Since no one method seems to work much better than any other, it makes sense for there to be a consistent approach to the behavior.  At school, when she screams, they give it as little attention as possibly directly.  If she is doing a preferred activity, they take away the activity and say "Tell me when you are ready"  If it's not a preferred activity, like desk work, they leave it in front of her.  If she moves to bite her arms, they put her hands down.  When she says she is ready, they go back to what was being done.  I told them about the screaming room (when we take Janey to the bathroom to scream if she isn't able to stop) and they liked that idea and might use that as an alternative for when the screams persist.

The last few days have felt more manageable with Janey.  The bus is getting more consistent and we are falling more into the rhythm of the school year.  I made sure to tell everyone today that they preserve my sanity every day, and I hope every special educator out there knows that although I don't like to throw around the word "hero" until it's meaningless, I'll make an exception here.  You are heroes.

Sunday, September 7, 2014

Yet Another Screaming Post

If you read this blog regularly, you might be thinking "She's writing about screaming AGAIN?"  Well, yes, because right now, it's the very toughest issue we are facing.  You might ask, "Why would screaming be tougher than all the other issues?  She's got plenty to choose from--severe intellectual disability, lack of toilet training, self-injury, sleep issues..."  Yeah, I do have a few.  But none of them affect our life quite like the screaming.

I'll use yesterday as an example of how the screaming affects and limits Janey's life and our own.  Janey was in rare form yesterday, with a huge amount of screaming.  It started early, very early, like 5 am.  We were awakened to screaming, not for the first time that night, of course, but this time we were up for good.  We tried to figure it out, as we generally uselessly always do.  She was wet, she was hungry, she hadn't had her medication yet.  We run through the list, and it helps, or it doesn't.  By around 8, we were totally burnt out.  Imagine someone repeatedly screaming absolutely as loud as they can, at random intervals, and there being no reason we can possibly figure as to why.  We resorted to ignoring.  That is very hard to do, but it works as well as anything, not better, not worse.

Later in the day, Tony took Janey to the grocery store.  That is something she usually enjoys, and for most of the trip, she did yesterday too.  But near the end of the shopping, she suddenly screamed as loud as she possibly could, over and over.  The store was pretty empty, but a man around 50 yards away started holding his ears---Tony felt not to be nasty, but just because it was truly hurting his ears.  Tony braced himself for what we always fear will happen---someone calling the cops, as it would reasonably sound like she was being tortured.  But no-one did.  She screamed until she was sick of screaming, and then fairly happily checked out and came home in a good mood.  Tony, however, was shaken and burnt out.  It's harder and harder and harder to take Janey anyplace.  The sudden screaming outbursts make it at the least not fun, at the worse, frightening.

After a while with Janey being happy, she decided to start the screaming up again.  We were at that point exhausted and completely done for.  I tried giving Janey a shower, which sometimes calms her, but she was having no part of it.  I lay down with her, trying to calm her.  Finally, in desperation, I started doing a silly game of clapping her feet together (which she loves) and singing "Clap, Clap, Janey feels like screaming (3 times for that line) But We Aren't Going to Scream!"  It worked, for then.  I have no illusion it will work ever again.  I have so many times felt I've had a breakthrough with an idea about controlling the screaming, only to have it completely not work the next time I try it.

I spent a good potion of the night trying to figure out what might make her scream.  I was too tired to think very effectively.  All I came up with is that screaming makes something happen.  It makes us upset.  Even when we ignore it, that's something happening---us being unresponsive.  If we are in public, it creates a scene.  It hurries us out.

But what good does knowing that do?  If ignoring doesn't work (and it's completely impossible to ignore her in public---WE might be able to, but those around us can't), if the events that cause the screaming seem random---what are we to do?  We have no idea.  None at all.  In my dramatic moments, I have been thinking that the screaming is ruining our lives, and Janey's life.  It's that bad.  And I have nothing positive to end with here.  Just a silent scream of my own.

Friday, September 5, 2014

School Starts, My Anxiety Rises

Janey started school yesterday.  Although her classrooms are sort of ungraded, she is starting 4th grade.

As always, although I'd been feeling a bit eager for school to start, the first day seemed to come suddenly.  However, we got out to wait for the bus on time.  It was supposed to pick up Janey at 6:29 am.  At 8:30, we finally gave up and drove her to school.  No bus showed up.  Not at all.  Now, if you have a child with autism, or, as a matter of fact, if you have any child at all, you can imagine that waiting outside your house for 2 hours for a bus that never shows up is not easy.  And of course, you can't go back in the house, because the minute you do that, the bus will show up.  Or you will think it might have.  It was a long 2 hours. The picture show the start of it, as Freddy was leaving for his first day of his senior year (he takes the commuter rail to school)

When we got to the school, we were told there were all kinds of bus problems, and that "you need to call the hotline".  Well, I had.  I'd called the transportation hotline twice at that point, each time was on hold for over half an hour and then was cut off.  I called twice more during the day, figuring that around noon there would be less volume.  One of the times, I stayed on hold for 45 minutes.  I never got through once.  When we were at the school, one of the school employees said something that is one of my least favorite things to hear "The only way to get this fixed is for you to stay on it as a parent".  NO.  I looked up and saw the staff directory for transportation for the Boston Public Schools runs twenty people.  That isn't the bus drivers or aides, that is the transportation ADMINISTRATION.  It is THEIR job to make sure kids are picked up by buses.  It is THEIR job to provide a hotline that actually works.  I am sure most of those 20 people make more than my husband does.  I emailed 3 of them yesterday, letting them know the bus never came.  No answer.  No surprise there.

I am ranting a bit here.  But it's this kind of thing that I find lacking in the schools.  There are wonderful teachers, principals, staff---I've barely ever met anyone that I would not trust my child to happily.  But it's a broken system in so many ways, and that affects the education.  For example, for summer school, the bus almost never actually reached our house before school was supposed to START.  It had more places to go before it got to the school, which is a 20 minute drive from our house even if you go straight there.  So the 5 hours of summer school was never 5 hours.  Janey's school this year runs from 7:30 to 1:30.  The bus showed up today at 7, with lots of other kids still to pick up.  They aren't going to get to the school. by 7:30.  And school seems to actually end at 1, not 1:30, to start getting kids on the buses, which is a huge job, I am sure.  So every day, there is teaching time lost, lots of teaching time.

These issues affect all kids, not just kids with autism, but like so many issues, autism makes it tougher to deal with them.  Janey needs consistency.  I considered just keeping her home yesterday, because if we drive her one day, she wants to be driven every day.  She needs the routine of the morning, not to get them when it's over.  She needs every hour of instruction she can get.

I realized yesterday part of what was upsetting me was that it was my first day in many years not taking a child to the Henderson School, Janey's old school.  I know she is doing well at her new school, and that there are great teachers and therapists there.  But I've never met her teacher in person.  She has a new ABA specialist this year, who I have also never met.  I don't feel like part of her new school.  I didn't know a soul in the office yesterday.  I felt the sting of having to change schools all over again.  I wanted the day to be like other first days, a happy reunion of friends I've known for years, with so many people greeting Janey and being excited to see her.  I have to remember that is MY issue, not Janey's.  I think she's happy where she is.

Rant over.  I feel better having written about it.  I hope everyone who reads this is having a great start to the new school year.  Sit back and have an extra coffee.  That is what I am about to do.

Tuesday, September 2, 2014

It's all stored up there somewhere!

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

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

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

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

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

Sunday, August 31, 2014

Janey in Maine---a tale of little sleep

Janey and I spent the last five days in Maine, where I am from.  We stayed with my parents.  I wanted very much to visit Maine for a little longer than my usual 2 or 3 day trip this summer, and I wanted Janey to get try some of the things that made summer special for me growing up.  So I decided to give it a try, just the two of us.  William is off to college and Freddy and Tony had to work.

How did it go?  Well----it was a mixed bag.  My parents did what they could to help, and I was glad Janey had time with them.  We did a lot of things---we went to a fair with lots of animals, we visited Pemaquid Point, which is a rocky seashore, my dear friend took us to have her mother meet Janey and to her camp, where Janey got to sit on a boat, as well as to an alpaca farm, and Janey got to run around outside a lot.  I put pictures on my Facebook page, and here is one of Janey on the rocks---I loved seeing her play on them, as that is what I did all summer long growing up. was tough.  Janey slept very, very poorly up there.  It was quiet, we had a nice bed in my parents' travel trailer, our own little place, she got plenty of exercise, but she didn't sleep.  And when she got overwhelmed, she screamed.

The sleep was so tough.  My parents watched Janey in the afternoons so I could have a nap, but nothing really makes up for a night with only 2 or 3 hours sleep.  I don't get to sleep quickly, especially when I am thinking I'm going to be awakened, so once I did go to bed, I lay there for a while, finally drifted off, and it would feel like a few moments rest and BAM---Janey was awake.  One night I tried waiting a while when she started crying to go to her, and she said in a very sad voice "I sprang to my feet to see what was the matter!" a quote from The Night Before Christmas and a pointed jab at me and what I was supposed to do when she woke up.  Generally, she was cheerful in the night, but not sleepy.  She walked around, recited things, poked me and just plain stayed up, usually from 2 am on.  My husband Tony and I trade off night duties at home, and Janey usually sleeps better than that.  She was in a place she wasn't used to, she didn't have Daddy around or familiar things to comfort her when she woke up---I can understand the not sleeping.  But I felt like a zombie in the daytime.

And the screaming...The screaming hasn't been as bad as it used to be most of this summer.  It's been a good summer.  And a lot of the time in Maine, Janey was fairly happy.  But when she broke down, it was badly.  At one point, when my parents were letting me nap and my father was taking a walk down their dirt road with Janey, she woke me up with her screaming, from quite a bit down the road and through the walls of the camper I was sleeping in.  I worried the neighbors, who don't know Janey, would think something horrible was going on.  My father did his level best with her, but when she is like that, it's almost impossible to calm her.  I went and got her and lay down with her, and finally, she calmed.  For a bit.  There were a few other incidents like this, always it seemed right at a time when I desperately wanted her to be happy, like when she met my friend's mother.

I'm glad I took the trip.  It was a big deal to me to be able to do it.  I have never taken Janey away from home for even one night on my own, and she has never stayed at anyone's house for more than a night.  Her having such success at camp gave me the courage to try it.  It was real life, not a camp where everything is geared people with special needs, and I need to keep that in mind.  She did the best she could, and we made it home in one piece, and she got to experience a lot of things she wouldn't have otherwise, and we both got time with my parents.  I'm going to catch up on my sleep the next few days, thanks to a rested Tony.  And school starts Thursday.  Or, as I should put it SCHOOL STARTS THURSDAY!!!!!

Saturday, August 23, 2014

Reflections on Janey's week at camp

We picked up Janey early this morning from her week at Camp Fatima.  What an amazing place it is!  We were truly blown away by the kindness and generosity of the so many people that make their Exceptional Citizens Week possible.  Her counselor, Dawn, teaches autistic kids during the school year, and then takes a whole week of her year to be with an autistic child at camp, and she is just one of the hundreds of volunteers that make the camp possible.  Janey went on boat rides, rode horses, sang in the church choir, went to a dance, shot a rifle, did arts and crafts, had meals served in the dining hall by teenage boy waiters, slept in a cabin, went to a campfire, had her nails done in the camp salon, hung out and ran around with her camp friends---she had a true week of camp.  And we had a week of true respite.

We got great reports from camp.  Janey was very happy there.  Her counselor figured out she does have a tough time every day from about 3-5 pm.  This almost made me feel good to hear, as that is her tough time at home too, and it made me feel less like I'm doing something wrong during that time and more like that's just Janey.  But the rest of the time, she was nearly all happy.  I had guessed she might be.  Janey is a natural camp-goer.  She is in so many ways the opposite of me as a child.  I was a natural get-homesick-and-go-home-early camper.  Camp was everything I didn't like then and still don't like now---sports, lots of togetherness, not a lot of downtime, a place for extroverts.  Janey is not like me.  She loves to be active and busy.  She is not shy or introverted.  That was one big reflection I had on this week.  A lot of Janey isn't her autism.  It's just her, who she is and I think who she would be with the autism or not.  I need to work harder to give her the kind of recreation and activities she craves.

At home, we got a very lot of sleep and rest, and were able to eat out a lot, go on some day trips and watch a ton of "Dexter" on TV---all things we don't do with Janey home. We had a lot of fun.  But I missed Janey very much---to be completely honest, much more than I expected to.  I knew I would miss her, but because we have never, ever before had a week of respite, to say nothing of really a full day of respite, I thought the missing would be overwhelmed by the freedom.  I loved the freedom, but I missed her so, so much.  Somehow, without her, we weren't quite operating at our best as a family.  We argued more.  The boys fought more. We got irritated at smaller things---bad drivers, bad pizza, forgotten keys.
We had a great time, but it somehow felt like a great time with a piece missing.

We eased Janey back into our regular life by stopping on the way home at a friend's camp (camp in the Maine meaning, a summer house) on a lake.  We had a great boat ride and Janey had time to run around in the beautiful yard.  Then the long drive home, and re-entry.  That was a little tough.  Janey ran through all the things she most likes to do at home quickly---some iPad time, a video, asking Daddy to cook things, ordering us to snuggle her on the bed, some YouTube---and then it seemed to hit her and she melted down some.  She was tired and I am sure she was missing camp.

What did I learn from this week?  I learned Janey can thrive away from me.  I learned I need to find a way to get more sleep, because sleeping through the night felt amazing.  I learned I have to find more ways for Janey to be active physically.  I learned that there are many incredible people out there who give of their own time for families like ours.  I learned, as I keep learning in life, that our children are their own people.  They like different things than we do.  They truly do deserve, and enjoy, a life that is at times apart from us.  But I also learned that our family doesn't feel complete without Janey.  She is part of us.  At times, when Janey is very tough, it has felt like she has somehow taken away the family life we were supposed to have, but I know now that our family without her isn't our family.  It's a different family.  We need Janey, maybe even more than she needs us.