Visiting High Schools

Although it's extremely hard to believe, Janey will be in high school next fall.  And so we have been doing visits to the high schools in Boston with an autism program.  It's been interesting.

We've visited three schools so far.  There's another program which is in a building that is closing this spring, and the future of it is unsure, so we haven't visited there, and there's a few other specialized programs we haven't seen, such as the high school part of the inclusion school Janey used to go to.  But the three we've visited are the three main choices we have right now.

To start with, I'll say that at all three schools, I was impressed with the dedication, talent and caring of the teachers, administrators, aides and other staff I saw.  That has been the case almost universally as we've been involved in the Boston public schools for the last 21 years with our three kids.

However, there were rather huge differences between the programs we visited.  This is another hallmark of the Boston schools---the uneven distribution of resources and the way it always feels like each school is a world unto itself, with little feeling that any school really gets what another school in the very same district is doing.

The complex map of Boston schools!

The first school we saw was very close to us---we could walk there.  It was in an old building that in fact Tony's 3 siblings went to high school in (he's the baby of the family by 13 years, so their high school years were a while ago!).  The building had been totally renovated, and was strikingly clean and orderly.  The program was in the lower level, and had 4 main classrooms.  We saw all the classrooms, but at the time we looked, none of them had students in them.  I guess that's not that uncommon a state of affairs.  The woman giving us the tour said that some students in the program are actually fully integrated, others are away at work sites almost all the time, and some are working at places within the building.  That was a bit of a theme there---work.  The program seems mostly set up as a pre-vocational one.  The students, once they are 18, actually get paid for their work, and they do all kinds---car washing, catered meals, recycling and others, in and out of the building.

We did see the students eventually, in the gym shooting baskets.  We got to talk to a few of them.  The ones we talked to were quite a bit more verbal than Janey is, and although we were told there are a wide variety of students there, I got the feeling most were probably more academically and spoken language oriented than Janey.

We asked about electives like music and were told there are none at all, at least not formally.  Aides do provide informal electives.

We left feeling that Janey would be safe there, but not that it was really the place for her.  I somehow couldn't quite picture Janey there.  She isn't interested in or really aware of money, she certainly wouldn't be into shooting baskets, music is too huge a part of her life to not have any music at school, and overall, it just didn't feel like a match for her.  But it was a good program, and I think would be just right for many kids.

The second school was in a very, very run down building, in the heart of the city.  It was, quite frankly, a dump.  The classrooms for autistic kids were again in the cellar, in 2 crowded rooms.  The room for the older kids, especially, was very crammed, mostly taken up by a large setup for serving sandwiches, which is the main activity for older students.  The hallways were claustrophobic, in my eyes anyway.

However, the teacher of the room full of younger students was great, just highly gifted as a teacher.  The students were doing their morning meeting, which they pretty much ran themselves.  Each student said good morning to every other student, in verbal or non-verbal ways.  They discussed the weather, said the Pledge of Allegiance and talked about current events.  The students were at widely varying levels of speech, and some that didn't appear to speak verbally went up to the board and wrote down things with perfect handwriting and understanding.  It was an impressive class to watch.

In some ways, I could see Janey at that school.  However, in a lot of ways, I couldn't.  It was sad to see how little had been done to make the school a nice place for the kids.  There seemed to be very little for the students to do when they were older (special needs students go to school until they are 22, generally)  Again, there were no electives.  I asked about kids being paid for work, and they don't have that program and seemed only a little aware of it.  It's not that I want Janey to work a paying job, but it's an example of the variation between schools.

We would not accept a placement for Janey at that school, we decided.  It was too crowded, too chaotic in the halls, and somehow just felt a little unsafe---with nothing taken away from the teachers, who were great.

And then the third school.  This one was VERY far from us.  It took us about an hour to drive there, and to get there, we had to go through several other towns than Boston, although it's in Boston---just at one extreme end of the city and we are at the other extreme end.

However, the program there was GREAT.  It's our clear choice.

They had us there pretty much at hello, as the directer giving us the tour said "First we'll show you the students and classes, and then the students will all be going to music and dance, so you can talk to the teachers".  They have music and dance!!

There were four classrooms in the program.  The students move from room to room, like regular high schoolers.  We saw many students, working at many different tasks.  In general, the students seemed to be academically much like Janey.  Many seemed to not speak verbally, or speak verbally just a little.  Some seemed to have multiple challenges, like being in wheelchairs.

The teachers all seemed very dedicated, and there were many aides.  One room at first didn't have students in it, and the teacher said they were in the greenhouse.  A greenhouse!  That made me so excited!

The students have swimming at least twice a week, and on Fridays, most students go offsite to various places.  There are various opportunities to work within the building, although again, they aren't paid---not an issue.

It's hard sometimes to say exactly why one program seems right, but this one did.  We could see Janey there, absolutely.  The fact there is music, even if it was just that alone, is a HUGE factor.  The distance---not ideal.  But Janey loves to ride the bus, and with Tony now retired, if we needed to go get her, we could (I couldn't do the drive---I just don't drive much, and not in complicated areas like needed for this drive, but Tony can!)

So---we know what our first choice will be.  I very much hope that is where Janey is placed.  If not, I think we are ready for a fight.  We've never really fought for much for Janey at school, mostly because we just haven't had to.  We've agreed with most decisions made.  And from what I've heard, usually you can get into the program we liked, partly because not everyone wants that far away location.  But with the one program possibly closing, things could change.  We are ready to be advocates.  It's not my favorite thing to do, but we've both decided that Janey WILL attend that program.

I'd be very curious to hear from others about high school decisions (or any school choice decisions).  I know most places don't have as many choices as Boston.  Growing up in a rural area, the only school choice at that time was take it or leave it.  We are lucky to have options here, but it can feel a bit nervewracking.  I wish Janey could just stay where she is, but life does keep moving.  And next year, it will be moving Janey on to high school.  Wow.

The summer starts now

When the boys were little, as we pulled into the driveway coming home from the last day of school, I'd always say "The summer starts...NOW!"  I'll say that to Janey as she gets off the bus this afternoon.  Her summer is starting.

Marshall Point Light, in the town I grew up in
in Maine.  Even with surroundings like this,
I still hated summer and I still do.

It's going to be a different summer than usual.  I'm not sending her to summer school this one year.  Last year, summer school was basically a disaster.  Her teacher was not a good match for Janey.  The bus was horrible, showing up whenever it felt like it, leaving us sometimes waiting outside in the hot sun for long, long periods of time.  The program itself seemed to consist of far too many kids crowded in one indoor room, being taught academics by a too small staff.  It infuriates me that in a city with hundreds of summer programs of all types, taking advantage of all Boston has to offer, that the best they can do for those with some of the greatest needs is to stuff them in a room.  I'll go back to trying summer school next year, as Janey will be in a different program then, the pre-high school program, but this summer, we're taking a break.

Of course, I'm a little panicked about how summer is going to go.  In the best of times, summer is my least favorite season.  I don't like heat at all, I don't like the lack of routine, I don't like much of anything about it.

I had all kinds of notions about setting up very detailed schedules to get through each day, but then I did a reality check and knew that would not work.  So I am trying something simpler.  Each day, in the morning, we will go someplace.  It doesn't matter where really.  It might be out to a fast food breakfast, or for a walk in a park, or to some store like Target, or to a pond to swim.  Once a week, I'm going to aim to take the train into the city, just to hang out.  Freddy is home this summer and is wonderfully willing to help out, or I would not really be able to attempt many of those things, but with his help, I think it will work.

I'm also going to pick one academic area a day to work on a bit with Janey.  I'm talking very basic stuff here, like picking a letter and working on learning to identify it, or talking with her about concepts like bigger or smaller, more or less, over or under, things like that.  I'll decide in the morning what that day's target will be, and then I can work it into the day---things like saying "Look, that flower is bigger than the other one!" or "I see a B on that sign!"

Aside from those two goals, I'm going to allow myself not to feel guilty about what gets us through the day.  If we get out in the morning, I'll relax if the afternoons are all videos and sitting around.  My energy level by afternoon is usually extremely low.  I can do things in the mornings, but afternoons---not so much.  Often, I get upset with myself over this, but I'm trying harder to be realistic.  Quite frankly, Janey probably wouldn't care if all day were just hanging out, as long as we took her now and then to the ice cream store and as long as Daddy gave her a ride at night, but I don't want to go that route.  So---I'll compromise with myself.

I'm still dreading the summer.  But that's not a new thing.  I can't think of a summer ever I didn't dread.  I'll be happy when it's September again.  Janey will have the same teachers next year as she did this year, and I dare say it was her best school year ever this year.  I can look toward that, and I think we'll make it through the next two and a half months.  Hopefully.

Janey's 11th first day of school

Janey started 7th grade today.  When I sat down to count, it surprised me a bit that it was first day of school number 11 for her.  She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.

I'll have to say, of all those first days, today might be the one I felt the most anxious about.  That seems counter-intuitive, but it's true.  Mostly, this is because of how summer school went.  Janey seemed truly unhappy for the first extended time at school.  She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so.  I think I should have done so sooner.  After about a week to decompress, we saw the happy Janey again.  We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing.  The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating.  Once we stopped doing that, she was happy almost the whole time.  She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that.  We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!

I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip.  It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference.  But that's not true.  Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey.  And as Janey gets older, it seems like school gives her less and less of what makes her happy.

Of course, the standard response to that would be "school is meant for learning, not entertainment".  And my response back---well, it's been 11 years now.  And Janey hasn't shown she wants or is able to learn what the schools have to teach.  It's not for lack of good teachers or lack of trying.  Most kids in her program DO learn.  They learn to read and write and do math.  They do amazingly well.  I think Janey has spoken.  She's not interested in that kind of learning.  And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.

So---what can I do?  I don't think the school I imagine for Janey exists.  I'm not even sure myself what I picture the school being.  Or if what I picture even is a school.  But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.

And you might have had the thought I've had.  That sounds like home schooling.  And that has crossed my mind.  But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it.  Not just I don't want to do it---I couldn't, physically or mentally.  Healthwise, I could not make it without the respite that school provides.  Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in.  I know that.  During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain.  We wound up staying home with Janey watching videos, with a daily walk to get ice cream.  That's all I could do.  That is not what Janey needs.

What happens when No Child Left Behind leaves your child behind?  I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance.  But in our quest to give each child a chance, can the vision of success be expanded?  Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment?  That is what I am going to be trying to figure out.

Home from our great trip!

I had big plans to blog a little every day while on the road, but I found out I hate writing on laptops---somehow I constantly move the cursor around and then do something which deletes huge chunks of what I've written, and fun stuff like that, so I decided to wait and write when I got home!

Janey and Michelle at the Toledo Zoo!

What a wonderful trip we had!  The best part, the very best part, was meeting Michelle and her family.  I met Michelle through this blog---she was the first person ever to get in touch with me after reading the blog, back when I wasn't sure anyone at all read it!  We've been long distance friends ever since, and phone friends, but I wanted more than anything to meet her and her family in person.  So we set out for Ohio to make that happen.

We drove out at a slow pace.  Although the total trip would have been about 12 hours if we drove straight, we knew we couldn't do that with Janey.  I split the trip into thirds, and we stopped at 2 different hotels on the way out and the way back.  We stayed 3 nights near Toledo in the middle.

Janey happy at a hotel breakfast

Overall, Janey did remarkably well on the trip---better than I had even hoped.  She loves car rides, so that was a plus. She also loves "hotel houses" and swimming, so I was hopeful, but warily so.  But we found that as long as we kept Janey happy, she kept us happy. We listened to only music she liked, and switched songs on CDs right away if she wanted us to.  I love hearing local radio stations, but that was not to be!  Once we were in a hotel for the night, we set up her iPad (wi-fi was a must) and she was able to snuggle her special pillow and watch her YouTube videos just like at home.  We swam at every hotel we could (one had a pool that wasn't open---NOT a good scene!) and we stopped whenever she asked us to.  That made for long days driving, as at points she asked to stop at almost every exit---she learned quickly that saying she needed to use the potty would get us to stop---but we like seeing what's off the exits, so we didn't mind that much!

The amazing Lindsey!

I loved meeting Michelle's daughter Lindsey!  I wish every one of you could meet her.  I have to admit she opened my eyes a good deal to how much a person who is non-verbal can communicate.  I'm not talking AAC or sign language---I'm talking just by being herself.  You knew exactly what Lindsey was thinking, and she has an amazing, unique personality---larger than life!  Tony said she would have been a huge star of silent movies, and he is right.  We got to spend the most time with her the last night, when Janey fell asleep at their house.  Without Janey being unpredictable and loud, Lindsey sat at the table with us for a long time and we had a wonderful time talking, her contributing to the conversation as much as anyone.

Getting to talk to Michelle and spend time with her was a dream come true for me.  Having girls with autism is what brought us together, but I know that if we had met any other way, we would have been drawn to each other just as much.  We have so much in common, and I felt like I was with a friend I've known all my life.  And having someone to talk to about our lives, lives affected by our girls in so many ways, while at the same time being able to laugh and talk books and about our other great kids and anything at all---that was incredible.  We both had a very hard time saying goodbye.  It makes me think about how wonderful it would be to live near so many of you, to be surrounded in "real" life by the great people I've met through this blog.  But I am so lucky to live in today's world, where I can be with you all virtually.

Happy we've stopped at yet another fast food place!

Janey starts summer school on Monday.  It's a little tough coming back to reality here, but knowing we can travel, and having met my long-lost second "sister"---that was a vacation of a lifetime.

Lessons Learned on day two!

1.  However much time you have allowed for a day's driving, double it.  I tried to make each day on the road about four hours, but with Janey, we find ourselves stopping constantly.  I really don't mind that, overall.  It's kind of interesting to see what's off all the exits, but if you are travelling with a companion like Janey, don't count on making good time.

2.  Route 80 through Pennsylvania is pretty but just a touch boring.  It's very rural, and there is not a lot to see from the highway, at least not much that interested Janey.  So she thought of reasons we needed to get off the highway---"I want potty", "want fries", "want to take a walk?"  It was all worth it to have a mostly happy traveller along.

3.  Don't count on listening to anything but the song that keeps your little traveller happy.  For Janey today, it was "Breaking Up is Hard to Do", sung by David Cassidy.  A song I like, but not so much 20 times in a row.

4.  Six am is a good time to use the hotel pool and hottub.  Nobody else is there, and you can have as much splashing and flapping and general loud happiness as you want. 

5.  You can only eat so much fast food.  After a while, you need to find a real grocery store, and they are a lot harder to find in towns you don't know than fast food is.  We finally found an Aldi's, which I'd never been to before.  The food was good and very cheap, but I almost caused a scene by not knowing I couldn't actually use the cart that was by the cashier to take things to the car---that was just a place to set down our groceries after she scanned them.

6.  I love how Janey gets excited about things, in contrast to a lot of the girls her age I saw at breakfast this morning who looked like they would rather die than crack a smile. 

7.  It's not completely easy taking a child with autism on the road, but I'm glad we are doing it.  Tomorrow, on to Toledo and the exciting moment of meeting my friend Michelle in person!

First day on the road

I'm going to try to write a little every day about our week long trip with Janey, to remember it and to share how it goes and anything I might discover about traveling with autism along for the ride!

This is the first trip we've attempted with Janey since she was 3, when she was diagnosed with autism.  Her diagnosis actually came soon after our last long trip, a 3 week cross-country one.  In some part of my mind, the part that likes to blame myself for things, I wonder if the trip had some part in her rapid decline at that point.  I don't think so, but for that reason and much more just because even short trips with Janey were tough for years, we haven't travelled more than a night or two since, and not much of even that.

For this trip, we will be gone 7 nights, in 5 different hotels.  There will be quite a lot of driving, as we go from Boston to the Toledo, OH area. 

We got on the road today about 9, and arrived here in Scranton, PA about 5.  What would be normally a bit over a 4 hour drive took us 8, but that was okay, as it was necessary to keep Janey happy, which, for the most part, she was.  Most of our stops were to deal with something that was upsetting her that swe couldn't do while driving.  She has her special pillow with her, and sometimes, it had to be next to her, while other times, it had to be out of sight in the luggage area.  I don't know why, I think only Janey's OCD knows why, but we stopped to fix that a couple times, as well as put in and take out her ponytail.  A few times, she screamed "WANT THAT SONG!" but wasn't able to say what song it was.  Luckily, I suggested a few songs and either got it right or made her think of another one that would work.

The most upset she got was in the hotel room, with her iPad.  She wanted to watch YouTube Kids, but I hadn't set the wi-fi yet.  She came close to biting me, but I evaded it and got the iPad going.  I think by that point she was just burnt out, and wanted to do something that felt like home, and once she did, she was calm.

We promised her swimming at the hotel, but she has fallen asleep before we could go, so we'll do that in the morning.  I hope she sleeps well.

Tony and I have talked about how this trip goes will be something we are paying close attention to, as what we hope to do when he retires is a lot more trips like this, to see the country.  We are low-key travellers, often happy with looking at car scenery, eating fast food and swimming in hotel pools, and if we can do that more in 5 years or so, we'll be happy.  If not, we'll make another plan, as Janey's happiness is a necessary part of our happiness.  We are encouraged by the many big smiles we saw today, on what was mostly a good start to the week.  Tune in tomorrow!

Summer memories

Today was the day I think of as the first day of summer---the first day of the first full week without school.  I will be totally honest and say it's a day I dread.  I've never, ever liked summer much.  I don't like the heat or the lack of routine.  With Janey, a summer day can feel endless.  I am very grateful for summer school, which starts in two weeks.  But today---it was a long day.  Janey screamed a lot, cried a lot, just was very out of sorts.  I felt out of ideas for the whole summer by nine in the morning.

Tonight, looking back on today, I realized something interesting.  Janey knew what the day was.  She knew it was the start of summer.  I realized that because of what she asked for.  First thing in the morning, she wanted to walk to the "ice cream store".  That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat.  We did that.  A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?"  She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine.  Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?"  Again, something we did very often last summer---walked to the train station to meet Tony as he came home.  We haven't done it since last summer.  Lastly, she then asked "Get Chinese rice?'  Yet another thing from last summer---having Tony bring home Chinese food often.

I don't know how it made me feel that Janey remembered all that.  It made me feel sort of guilty, that her summer memories are of such mundane things.  It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken.  It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.

I wish I could do more with Janey in the summer.  But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger.  There are splash parks around, but they are filled with toddlers and preschoolers.  Janey is the size of an adult, and unpredictable around younger kids.  There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school.  Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't.  The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly.  So, much of the time, we stay home.

With that being said, I am hugely looking forward to later this week.  We are taking a trip!  Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on)  I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools.  We are going to keep everything as low key as possible.  I still am not sure how it will go with Janey, but I hope well.  She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!)  So wish us luck in making some new summer memories for Janey.  I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!

A great trip with Janey, but missing her brothers!

On Saturday, we headed out to upstate New York to take Freddy to college.  He is going to Skidmore College in Saratoga Springs.  I must say that overall, in terms of Janey, it was a hugely successful trip.  She is a great traveler!  We kept looking for wood to knock on over and over, as we commented on how well she was doing.  I think if we took every minute of screaming and tantruming from the whole over 2 day trip, it wouldn't add up to more than half an hour---which is incredibly good.

Of course, the trip was hard on me anyway!  I had a hard time saying goodbye to Freddy.  He's an incredible kid, and it will feel very strange not having either him or his equally incredible brother William at home.  For now, it's just the three of us---Tony, Janey and me.  But as I said to Tony at one point, I'm feeling a little more optimistic about the future after seeing how well Janey did on the road.

Janey digging in at the Chinese buffet

Part of what made it work is that we kept things very low key.  Janey loves just being in the car, driving around, and Tony and I do too.  We rented a big SUV for the trip, which we loved!  Our car is an old Saturn with almost no modern features, not even automatic windows or a consistently working car radio, but the Ford Explorer we rented had everything.  We kept joking it was like we were suddenly in the world of the future.  I especially loved the Sirius Radio.  I wanted to explore all the stations, but Janey has a routine of listening to certain music in the car, mix disks that Tony has compiled, and to keep her happy, when she asked for "Disk?  Disk, please!  Disk"  we put one of hers on.  We also didn't try to do anything touristy besides driving around and looking at things.  We didn't try eating out except for quick places like fast food or a Chinese buffet on the way home, and we didn't visit local landmarks, except by driving by them.

The fancy lobby of the hotel.  The rooms were NOT as fancy!

I was very worried about the hotel.  It's racing season in Saratoga Springs, so all the hotels there were either fully booked or exceedingly expensive, so we stayed in a neighboring town in the hotel that made my Priceline offer.  It turned out to be a very old, once grand but no longer hotel.  I read reviews of it that mentioned the thin walls and the complaints about noise, and I could picture Janey's screaming getting us kicked out.  However, even with internet that didn't work at all the first night, Janey didn't scream!  When she got a little loud, I said in an exaggerated whisper "We have to be very quiet at hotel houses.  Shhhhh!"  Janey found that hysterical and started walking around imitating me, but in a whisper, which worked well for keeping her voice down!

One of the best parts of the trip was swimming.  The hotel had a lovely pool, and we used it mid-day, and had the whole pool completely to ourselves for over an hour.  Janey loved being in the water!  We also went into the hot tub next to the pool with her for a little bit, and that was amazing.  For the 10 or so minutes we were in there, she was completely quiet and calm.  We all three just sat there, enjoying the heat.  I can't remember, ever ever ever, having a time like that with the three of us.  Tony and I kept looking at each other in wonder.

Tony waving goodbye to Janey on her first day of 5th grade

We got back Monday night, and Tuesday morning early (6:30!) Janey got on the bus for the first day of school.  Evidently, things went well.  The bus was an hour late getting home, due to first day glitches and the hot weather, but Janey took it in stride and seemed perfectly happy getting off.

So now, we start the next phase of our lives, what will probably be the phase until we are gone, the three person family.  Of course, the boys will be home for vacations and summers, and I can't wait.  But it's never going to be quite the same.  I was surprised by the depth of my emotions at having both boys gone.  I kept thinking about how it seems only a few days ago they were toddlers, and I would think "Can't they ever go a second without needing me?"  Now they are adults.  It goes far too fast.  Even with Janey, where time sometimes seems to stand still.  She is almost as tall as I am.  None of the clothes I had set aside for the first day of 5th grade fit her.  We share shoes.  She is growing up too.  The future comes rushing at us relentlessly.  Best of luck, my college junior and my college freshman and my 5th grader.  I love you three.

Janey is at camp!

I haven't written at all here until now about Janey going to camp.  I think that was because I feared a jinx, or thought I still might decide not to send her at the last moment, or something else would happen to have it all fall through.  But she is there now!

The camp is called Camp Fatima.  It's in New Hampshire.  They have a week every year called Exceptional Citizens week, and during that week, they accept campers with all types of disabilities, campers that would not be able to go to most any other camp.  Here's a website about the camp.  It is run by the Catholic Church, but you don't have to be Catholic to go (we are not).  From everything I've heard, it's an amazing, amazing place.  It's totally run by volunteers, many who come back year after year after year, and each camper has a counselor assigned just to them.  There is boating, swimming, horseback riding, archery, tennis, arts and crafts and more.  Every year the week has a theme, and this year it's "The Sound of Music", which was made for Janey!  They perform a little bit of the musical every night at dinner. The camp is totally free, payed for by donations.  I heard about the camp years ago, from teachers and therapists at Janey's old school, many of whom volunteer there.  They encouraged me very much to apply, although I was hesitant, but I finally did.

Taking Janey up today was a bit of a mixed bag!  Yesterday was her birthday, which was also a mixed bag.  She did very well in the morning, but the excitement got to her by the afternoon (it's also her brother's birthday, and although I try hard to keep it low key, she almost always has a hard time with it).  She was AWFUL in the afternoon---biting and screaming and just completely wild.  But by evening, she was happier, and she woke up in a lovely mood.  The ride to camp (about 2 hours) went well!  She was cheerful almost the whole way.  We took both boys, and that helps, as she likes being around her brothers.

When we got to camp, it was a chaotic scene at first, as a check-in like that always is!  We had to wait in a line in the car a bit, and then went to wait to hand in Janey's medication.  Janey started to lose it, completely.  She started screaming and biting herself, and actually did bite me.  At that point I was talking to a camp worker I thought was a check-in person, who was wonderfully calm about how Janey was acting, as was almost everyone!  People were clapping and yelling "Welcome to camp!" and acting like she was perfectly normal.  That was great.  I had Tony wait in the line for us, and we went over to her cabin, and showed her her bunk (the counselor sleeps right above her!) and I figured out that the woman I was talking to, Dawn, was actually Janey's counselor!  That was GREAT news, as she is a teacher in an autism classroom and has worked with autistic kids her whole career!  It's amazing to me that she takes a whole week a year to volunteer at the camp.  I told her that what she had just seen was about as bad as it gets with Janey, and it's usually a lot better than that, and indeed, Janey had already calmed down.  She liked seeing her bunk and cabin, she had some juice, and we went outside.  The picture is Janey with her cabin in the background.

I loved the questions Dawn asked---all the things that are necessary to know about Janey!  She said they pretty much have the kids do the activities they want, so if Janey likes the boats, she can spend a lot of time on the boats!  She said she will call for sure if things get out of control, but she doesn't see that happening.

We left after not that long!  It's always better with Janey to go while the going is good, and she doesn't like transitions, so we knew she'd not want us hanging around!  She happily high-fived us all goodbye and let Tony and me kiss her, and we were on our way.  We pick her up Saturday morning.

Now---almost a week to fill!  I miss her already, but I have to admit---it's going to be incredible in a lot of ways to have a week of respite.  We have NEVER had anything CLOSE to that.  We've never been away from Janey for more than one night together (once only for the one night, even!) and to have 6 nights---we aren't going to know what to do with ourselves!  On the way home, we all found ourselves getting tense when things happened that would upset Janey---bad traffic, loud noises, music stopping---it was very hard to picture that she just wasn't with us.  We stopped at a restaurant even though we weren't that hungry, just because we could!  Tony has the week off, and we plan a few day trips and maybe one night in a hotel in the city with the boys.

I am of course going to be nervous all week, waiting for a call to say that we need to come get Janey, but the truth is, it wouldn't matter where in the world she was, I would still feel that way.  I think she's in one of the best possible places she could be, and I am extremely, extremely grateful to the camp, to Dawn, and to all the people that encouraged me so much to apply!

Summertime School and not "using your words"

I've always disliked the phrase that people often say to kids "Use your words!"  I know the intent---to remind kids that when they are angry, they need to express verbally what's bothering them---but long before I had Janey, I felt that it was a kind of accusatory way to talk to kids.  When they are upset, it might not be possible for even the most verbal kid to think of how to phrase what is upsetting them, and I think a kinder approach would just be to hug them or be sympathetic.  But now, with Janey, I hate the phrase, because Janey CAN'T use her words.  And it's not because she doesn't have any words.  She has lots of words, but she can't use them, mostly.  She can recite them, she can plug them into set phrases, but she can't use them, almost ever, to tell me what's wrong or why she is sad.

That's a big part of why things like summer school are so nervewracking for me.  Janey started summertime school today (officially, it's Extended School Year, or ESY, but for Janey, I call it summertime school).  I did better than other years.  I didn't lie awake for hours last night worrying about today.  I know enough people that will be there to know at least someone will have an eye on her, and I was thrilled today to find Mr. Ken, Janey's ABA specialist, waiting there for us.  That made it like handing her off to a dear friend.  I didn't know her teacher, but met her today, after no-one knowing who she was for a good long time.  Everyone meets outside, and it's about how you'd picture a very lot of autistic kids being placed into the classes on the lists.  A lot of the kids are not eager to say their names, or can't.  But I was impressed at how relatively calm everything felt.  I left without extreme nervousness.  I know Ken will tell me how it went, honestly, and I know that the other 5 or 6 people I saw there today that know Janey (some of which I don't know, they just know Janey from other years) will be seeing how she's doing.  But Janey can't tell me how she felt about school.  If something scared her, big or little, she won't tell me.  Maybe there are noises in the school she doesn't like, or they have a routine that bothers her, or another kid might hit her.  None of those would be huge things, but without being able to hear about them and talk to Janey about them, they might very much be impacting how she is feeling about school, without me being able to help.

As we parked this morning to walk in, for one of the first times ever, Janey tried to fight me on walking to the school.  She tried to go the other direction, to a playground she could see down the street, one she liked last year, with a water sprayer.  Or I assume that is what she was resisting.  It could also be that she just didn't remember what summer school was, and was upset we weren't at her regular school (summer school is in a totally different place).  She tried again to pull away from me when we walked past a door that I think they use to go to swimming, which she also loved.  It took all I had to keep her walking in the right direction, which was scary.  She gets stronger all the time.  I had to use my patter---my non-stop talking routine to keep her distracted and moving "Hey, let's head to school!  I think we might see Mr. Ken there!  We might see some of your friends there!  I wonder what they will have for breakfast?  I think you'll have a great time! Let's keep walking!"  It worked, for now.  There will come a day, I am sure, when I won't be able to get Janey to go where I want her to go, physically.  That day scares me to think about.

And so, she's off.  She's off for the day, and I'm home, and I will never know exactly what she did all day.  I might get notes, I might hear parts of it, but with a child that can't use their words, so much of what they do out of your sight is a mystery.  I just have to hope, to fervently hope, that she is happy and cared for and well.

My fantasy wish list

Janey seems to be over whatever was happening this weekend, the horrendous crying spell.  We are recovering---Tony and I, and the boys, and most of all Janey.  But it's left me thinking about our lives a lot, and especially---what would help?  What would make it easier to be Janey, and to parent Janey, and to be a sibling to Janey?  I had some ideas.  These are not ideas anyone can make come true.  They are more like fantasy ideas, but I wish they weren't.

The biggest idea, the biggest truly helpful thing---a drop-in center for respite.  That is what I daydream about.  I've written about it in the past (here).  I dream of a center staffed with trained autism professionals, along with paraprofessionals and volunteers (many high schools now require volunteer hours, and this would be a great job for people interested in a career in special needs).  You could pre-register there, and get assigned a certain number of hours, and be able to bring your child in with very minimal notice.  This would in so many ways be more helpful than in home respite care.  That's because what we crave most is a chance to just relax at home, maybe watch TV or a movie or cook or talk with the boys or even have a few minutes of adult time.  We don't want to clean the house and pay for dinner out, which having in home respite would require.  In fact, we do have in home respite---the boys.  If they are available and we have money to pay them, they can always watch Janey, but it's too expensive for us to go out often, and it's not what we need.  We need some time as a family to regroup from the incredibly tough job of parenting Janey.  And she would benefit greatly from a change of scenery at times too.  I picture a place with a sensory room, a fenced safe outdoor play area, autism friendly toys---not a place for learning or drilling or school, just a recreation place that the kids with autism would love and their parents would love even more.

Another thing that would be helpful---a time machine.  I wish for this because I feel like right now, we are in the infancy of understanding autism.  The epidemic, if there is one, has just started in the past 10 years or so. We are at the stage I imagine is like the early stages of any new illness on the scene.  People are desperate, people all have theories, and everyone is well meaning, but no-one completely knows the best practices to follow.  No matter what you do, there is something else you aren't doing, and you always wonder if that other thing is what you SHOULD be doing.  I wish I could go forward 50 years, just for a day or so, and see what has been learned about autism.  What treatments have stood the test of time?  Then I could come back and go forward confidently with what I've learned. Or maybe I'll learn nothing has shown to help.  Then I could just relax and concentrate on giving Janey the best life I can with what we already have.

The next wish is one that is similar to almost anyone's wishes---unlimited money!  I wish I had enough money for a new house, one with a room that could be made into Janey's own sensory room, one with a big backyard, totally fenced, so Janey could run around all she wanted, one with an indoor pool (I'm dreaming big here!).  I wish I could take those great catalogs full of autism friend supplies that are hugely overpriced, and just order anything that caught my eye.  I wish I had money to fly all the mothers I've met here for a long weekend in a luxury hotel, where we could laugh and eat fancy food and drink fancy drinks and regroup and relax.  I wish I would not have to worry about every cent, or our lousy health plan.  I wish I could buy Janey anything that might help her without ever thinking twice.

My last fantasy wish---mind reading.  I wish more than anything I could go inside Janey's mind, and see what it was like.  I wish I could know what she is feeling when she cries all day, or when she manically repeats lines from videos, or when she obsesses over certain foods, or when she loves a piece of music, or hates it.  I wish I knew how her perception of the world is different than mine, and how I could modify her surrounds to work with that.  I wish I knew how much she understands of what she hears.  I wish I could be her, just for a little while, so I could be a better mother to her.

There are so many things I don't have to wish for, because I already have them---a great school for Janey, a wonderful husband and siblings for her, her good health---all of that.  I know I am lucky in so many ways.  But for Janey, I still have so much I wish for.

A Day at the Beach

We went to the beach yesterday, and had a great day, overall. It's wonderful when we can enjoy ourselves while Janey is too.

I worked a lot on something they have been doing with Janey at school too---teaching her to come back when called. I let her run a bit on the beach, not far, but a little ways, because of the nice long visibility. Then I would yell out "Come back, Janey!" and nine times out of ten, she did! I gave her a high five when she came back, and said something like "See? If you come back nicely, you can run around more!" She seemed to get it. However, the one time out of 10 she doesn't come back is the killer, and in most places, there's a lot less visibility and a lot more things she can get into than at the beach. But it's a start.

Janey loves the water and the sand. She is fearless with waves---they wash right over her head and she just laughs. When we wanted to sit on the beach blanket for a while, she just sat sifting sand in her hands, mostly.

The ride to the beach on the subway was a little tougher. Janey hasn't been on the subway much, and the noises bothered her. It was interesting and a little sad watching how hard she tried to keep it together, but after a few stops, she couldn't. I talked to her about the noises, how they were normal and just the train moving, and she did calm down some after a while, but with some loud crying and screaming first.

When we got to the beach stop, she got upset again, and actually told me why! She kept saying "This is NOT Ve-vere Beach!" "I want to go to the beach!" The other times in the last few years we have taken her, it's been by car, and climbing stairs out of a subway didn't make it seem like we were going to the right place. I reassured her we would see the beach very soon, and when we did, she was fine.

My friend Maryellen and her daughter went with the boys and me for the trip, and that was perfect, as there was a variety of eyes to be on Janey if mine weren't for a minute, but no-one had full charge of Janey every single minute. If someone does, it's impossible for them to have fun and relax, but if I have primary charge but know I can get a break when I need one, it's great. I can enjoy the time with Janey, playing in the waves, digging in the sand and just watching her enjoy herself.

I guess my conclusion here is that it IS possible to have enjoyable days out with Janey. They have to be doing something she likes, there needs to be a big ratio of potential caregivers to Janey, you have to be prepared for meltdowns now and then, but although that sounds like a lot, it didn't feel like it. It felt like a nice, relaxing day, something I need to figure out a way to have more of.

Direct Services---that's what autism needs!

This article is something I happened upon, and it made me wish I lived in Jacksonville! I just recently figured out the term for what I think is desperately needed---direct services. If I am correct, it means services that directly aid children with autism---not money for research, not money for awareness or walks for some small portion of the "cause", but real services---respite, recreation, camps, after school programs, buddy services, sports opportunities, things like that. I am so lucky that Janey is in a great school with a great after-school program, but I still wish for more. Janey loved the Irish Step lessons she gets at afterschool. I wish she could go to more lessons---real swimming lessons, not just an open pool, a day camp, gymnastics lessons, all kinds of things. Things that "regular" kids can do.

The other part of this is that I think there's a lot available I have no idea how to find, or that is available only to certain richer communities, or certain religions. A wonderful resource would be a person (or guidebook or website) that brought together all the actual direct services out there. I think sometimes places that have a program avoid advertising it too much, for fear of being overwhelmed. I can get that, in a way, but on the other hand, it bothers me, if only in that is shows how desperately such programs are needed.

And there's the question of quality. I never want to put anyone or anything down here, so I won't get specific, but one sports opportunity we tried just wasn't safe. Janey was repeatedly being assaulted---pushed over and hit--- by a boy bigger than her, also autistic. I don't blame the boy. He wasn't being supervised, by his father or by the staff. And they were frankly overwhelmed. It was a mess, and we decided to just stop going. I don't think most families would tolerate that kind of situation for their "regular" kids, and I see no reason they should for their autistic kids either.

I am so lucky in what Janey does get to have at school and afterschool that sometimes I feel like I'm being greedy in wishing she was able to get more, and maybe for right now, she is getting enough. But she won't always be at her school, although barring miracles, she'll always be autistic, and there are many, many kids like her. I hope that some of the wonderful giving that people do to help autism will get directed to programs that will directly serve our great kids!

ABA

Well, there is some news for all my faithful blog readers (of which I am not really sure if there are many, let me know!). On Friday when I took Janey to school, her teacher stopped me as I was leaving and gave me a paper, and told me to come in for a minute. It turned out the paper was the long-awaited ABA evaluation, and that one of the special ed coordinators wanted to talk to me about it. I went down to talk to her before reading the paper, and found out it was recommending 6 hours a week of ABA for Janey, and they wanted me to sign an amendment to her IEP approving it. So of course I did, before even reading the report. Once I did read the report, I found it to be both extremely accurate and quite heartbreaking. The woman who observed her is I think the head of ABA services for Boston schools. She really seemed to understand Janey well with just an hour of observation. Basically it said that despite 1 1/2 years of school, lots of therapy,supportive teachers and special ed placement, Janey is "not accessing the cirruculum in any meaningful way". So what I knew to be basically true, she is learning nothing. It listed all the things she couldn't do, which are all goals on her IEP---body parts, shapes,numbers, letters, etc. It said she seemed driven by inner stimulation. They tried to get her to respond to her name and she failed, responding 0 out of 10 tries (that is an ABA type thing to do).

I guess the services are supposed to start right away. I really don't know how they will fit in 6 hours of ABA in a 12 1/2 hour week of school which already includes 6 other hours of therapy. It shows how ridiculas a half day of school is for her.

The nice part was how thrilled everyone was she was finally going to get more help. The special ed lady, the teachers, the secretaries, everyone seemed close to tears over how they love Janey and how they want her to get more help. It really made me happy but also made me feel a lot of other emotions, like that I should have fought to have it be sooner, that they should have helped it be sooner, that I still don't think ABA is the way to go for Janey, but she needs SOMETHING I know, that I am so tired of all of it.

I also found out yesterday that Janey could go to a swim thing each Sat. now at the Hyde Park Y. They call it a social swim, but you have to be in the water with your child, and I can't see her socializing much while she is swimming. Regardless, we went today, and the whole family is invited so the boys get to swim too. It's a great chance for us all to get a swim even if Janey doesn't get socialized, and it's free. She swam today with 3 floaties and holding a barbel type thing "by herself". She does love the water as do all of us. The boys swim like fishes now. They look so graceful in the water.

Janey is singing more again. She sings all the words of Black Sabbath songs that William plays, and sings show tunes I play, and most any songs she's ever heard. She might not answer to her name, but the girl sure can sing.