Janey and the Eclipse

 Seeing a total eclipse of the sun has been something I've wanted to do ever since I was aware such things existed.  So last week's eclipse, which was total in parts of my home state of Maine, was a must-see for me.  Luckily, we have dear family friends that also wanted to see the eclipse, and we all (fifteen people total, from their extended family and the five of us!) headed to Presque Isle, Maine for the big event.

In the weeks leading up to the trip, I was nervous about how Janey would do.  She likes car travel, but lately, not long trips as much, and this trip was going to be about seven hours each way if we didn't stop at all, and you know we are going to be stopping!  With Janey's moods, if we had hit the wrong mood cycle for the trip, it could have been close to a disaster.  But, as with many things on this special trip, we hit it just right.  I am pleased to say Janey could not possibly have been much better for the whole trip!

We rented a minivan, and left very early Sunday morning.  The five of us (Janey's brothers in their 20s, William and Freddy, and Tony and me) are all early risers.  We were out of the driveway by 5:30am, which was a good decision.  The traffic had been a worry, but it was light, and it stayed light the whole ride up.  We drove up slowly, stopping often for bathroom breaks and food and coffee.  Janey slept some, but mostly spent the ride as she spends much of her time at home, watching videos on her tablet or (non-calling) phone.  We hot-spotted her off our phones, and aside from a few spots when we hit the uninhabited woods of Maine north of Bangor, we had good coverage.  It can get tiring to hear the shows Janey likes over and over and over---the theme song from Vamperina is etched in my mind---but it's worth it to keep her happy and cheerful.  We packed lots of food she likes, and we stopped for her fast food favorites---Burger King hash browns and later some Wendy's nuggets and fries.  And of course coffee---something we all drink.

Very early start!

We got to the hotel about 3 pm, and there met up with our friends who got there shortly afterward.  I wondered how Janey would react to seeing her favorite adult friend Maryellen in a place so far from where both of us live, but she didn't seem surprised or confused.  I'd told her in advance she'd see Maryellen, of course, but I think even if I hadn't, she would have just accepted it.  Life must sometimes seem like that to her on an everyday basis---odd things happen she isn't sure of the reasons for and she has just learned that's how life is.

Janey loves hotels, which she calls "hotel houses", as a general rule, and she did very well at this one too.  They feature endless hot showers and the fun of choosing a bed from the two in the room, and usually a breakfast buffet.  They are a change of scenery that isn't too radical a change for her, I think.  Unlike a lot of people with autism, Janey is pretty good with changes, as long as she has familiar people around her and can have the comfort of her  videos and music.  

And the actual eclipse?  One thing I wondered about a lot is whether Janey would notice how strange it all was---to have night suddenly appear during the day.  I told her about it, explained it as best I could, but I don't know what she understood.  And as with seeing her friend far from home, Janey didn't seem terribly surprised by the eclipse.  She was happy out in the big field we watched it in---but I think that was because she had goldfish crackers and her videos and lots of family and friends around who seemed to her to be oddly exuberant over what I think she saw as a pretty regular afternoon.  We did have her look through eclipse glasses as the sun started to get covered, and asked her if she saw how the sun was getting covered, and she gave a mechanical "Yes" and pushed the glasses away.  

Janey and Tony during totality

For the rest of us---WOW.  If you ever have a chance to see a total solar eclipse---grab the chance.  To say the eclipse was life-changing is not overstating it.  It was truly the most amazing thing I will ever see, I think.  The boys and Tony felt the same way.  The weather was absolutely perfect---completely clear---and the corona shining around a dark sun in a suddenly dark and chilly day with a sunset that extended all around the horizon---it was something it's impossible to describe, something that affects every sense, something that makes you feel the majesty of this universe more than you are ever expecting to feel.  

Amazing

It struck me that this experience illustrates something that I've come to understand about Janey's life.  She is living a life that is parallel to ours but in some ways very different than ours.  Of course I don't know what she is thinking, but I think she lives a much more present tense life.  She didn't anticipate the eclipse as I did (in my case for nearly 50 years, from the time as a child I read there would be an eclipse visible in Maine in the far away year of 2024).  She didn't worry about the ride up.  She didn't think about how it would be dark for only 3 minutes.  I am not saying something all sentimental like "We should all learn from that!"  I am glad I can look forward to things, can appreciate how brief and amazing such moments as totality are.  I'm glad I can understand what causes an eclipse, can treasure spending it with family and friends, can look back on it with wonder.  But I can also accept Janey's way of experiencing life is all she has known, and that she doesn't feel a loss by not experiencing it as I do.

By the ride home, the rest of us were probably getting just a touch cranky, but Janey was upbeat.  By the time we hit Boston traffic, when I was wishing as I often do that I was back in Maine, Janey was the only one still in a pretty good mood.  Just before we pulled into our driveway, we all gave her a round of applause for being such an amazingly good traveler.  Thank you, Janey, for being a special part of a trip none of us will ever forget

Janey enjoying the pre-eclipse

Struggling a bit

The last three or four days have been tough ones for Janey, and for me.  She's been crying a great deal, more than in ages.  We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).

We really don't know what's up with Janey.  Our best guess is boredom.  Summer school is over and regular school doesn't start until September 9th.  Janey doesn't like there not to be school.  She enjoyed summer school a lot, from all indications.  She likes activity and movement and going places and doing things.  Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one.  The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live.     (Picture is Janey on a better mood day)

Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years.  Like Janey's crying, I'm not sure why.  Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time.  I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family.  It was a great trip, even with a 17 hour train ride out and another back (I don't fly!).  I relaxed so much!  It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with.  Coming home was hard.  Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.

Janey turned 17 last week.  It was a good birthday, one of the first times I felt like she kind of got the birthday thing.  She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day.  Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday.  He turned 24.

Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard.  As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are.  I am working to accept Janey will never be fully toilet trained.  She will never talk in a way that is truly communicative.  She will never learn to read.  She will never be able to be unsupervised.  She will remain much as she is---functioning at a toddler to preschool level for life.  May the future prove me wrong about any of this---I'd love to be wrong.  But I am not wrong. 

I try very hard not to let myself get depressed or in a self-pity spiral.  This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion.  It's for a couple other reasons.  One is that knowing myself, I do better if distracted.  Letting myself go to dark places feeds on itself.  If I make myself stay busy and chipper and active, I feel better.  The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey.  Someone still needs to care for her.  And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver.  The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality.  Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.

And so---what do we do?  We do what all of you do.  We get by.  We wait eagerly for school to start.  We take Janey for as many rides as we can.  We comfort her as best as we are able.  We trade off sleep, we trade off eating, we trade off moments to recover.  

I can't give in to depression, but I can admit to it.  It's a tough life.  It's tough for Janey, and it's tough for us.  Love to all of you out there living a similar life.

 

Better Than Typical

Trying on a cape!

It's interesting that I am a lot more cautious when writing about the extremes of Janey's behavior than about the everyday parts of it.  I'm always a little wary of being completely honest about how bad or how good it sometimes gets, although I always do try to be as honest as I can.  But either extreme is something I know can be hard to read about.  I don't want to discourage those with girls like Janey when I write about the toughest times, and I don't want to discourage them by writing about the best times, either, if they are going through tough times.  However, our one night trip last weekend with Janey was so wonderful I feel like I have to share.  And what kept striking me the most is how I imagine it was far BETTER than such a trip would be with a typical almost teenager...

Last Friday after Janey got home from school, we drove out to get her brother Freddy in upstate New York, at Skidmore College where he was finished with his sophomore year.  It's a trip Tony could and has done alone, but I really felt like I needed a change of scenery, so we reserved a hotel room for Friday night.

Janey was completely happy during the whole five hour drive out (it would be three hours without any stops, but we don't roll that way).  We played music the whole time, and she rocked out to a huge variety of tunes.  I love how open she is to music, to songs she hasn't heard before and songs she's heard a million times.  If it has a good beat and is interesting, she likes it, and lets us know (as she does if she doesn't like it!).  She isn't influenced by what's cool, or not cool, or what we want her to like---she likes what she likes (which was proven by the fact one of the songs she got really into on the drive was sung by Justin Beiber, and our feelings about the song didn't matter to her!)  We all discovered we loved a song by The Lemonheads, Janey let us know she's not into Madonna, we all liked the various Nicktoons songs my Slacker Radio app picked, we had a blast.

In awe of Freddy's dorm

When we got to Skidmore, Janey was just about overcome with excitement.  We don't go a lot of places at night, being very early to bed people, and getting out in the parking lot of Freddy's dorm, seeing his dorm tower and the streetlights, taking an elevator up to his room, trying on a cape that was in a box of give-away castoffs in the dorm hall----it was like we had set her up with the ultimate night of fun and thrills.  I kept thinking about how I would have felt about such a trip at her age, or how the boys might have felt.  It's fair to say I wouldn't have been quite so excited over a long drive with my parents to pick someone up---one with no real recreation or treats involved.

The thrilling elevator ride!

Janey loved the hotel, slept well, had fun at the breakfast, was happy in the car, where she several times looked to Freddy and said "It's Freddy!" in pure delight he was with us again, requested french fries but did fairly well waiting for it to be 11 am so they would be available at a rest stop McDonalds---she was great for the ride home almost all the way, until literally the last few minutes when she was sick of driving, as were all of us.

It's funny---it somehow sometimes seems wrong to delight in the GOOD that having a child like Janey brings, and it shouldn't be.  There is much that is good about having a 12 year old that still adores us, that can get excited without self-consciousness about little things like an elevator ride or a Happy Meal, having a child that wants little more in life than family, music and fun.  When Janey is happy, we are all happy, and I am going to try to stop thinking of that with an asterick, thinking "Yes, she's happy, but although being a typical preteen might be tougher, she is missing so much..."  Well, we all are missing something.  What she is missing might be different, but what makes her happy is different too, and we can delight in her happiness without thinking of it as a "despite of" thing.  We are so lucky to have you as a daughter, Janey.

Daytime Bedwetting, Crying, Guessing...

Toilet training.  I'd say I'm an expert on the subject, having been training Janey for about 10 years now, but that's a case where the longer you've worked at it, the less of an expert you probably are.  

My dear friend Michelle and I talk on the phone quite a bit.  Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey.  She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.  

I used to think that there would be an endpoint with the whole potty-training deal.  There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't.  It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.  

Right now, at age 12, Janey almost always uses the toilet for bowel needs.  That is wonderful.  I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.

For urine, Janey uses the toilet in some circumstances.  She wears underwear to school every day, and rarely has an accident there.  Out of the house in general, she does very well.  On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident.  Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes.  At home, though, it's much more of a chancy thing.  I'd say she uses the potty about 50 percent of the time for urine at home.  it's the other 50 perfect that is very, very tough.

For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home.  I'm not talking during sleep here.  We put her in two pullups at night, and we probably always will.  I'm talking when she's awake.  She will go over to the bed and wet it, in the daytime.  As you can well imagine, we are not huge fans of this.  We have tried everything we can think of to discourage this behavior.  We take her to the bathroom on a very regular basis, and try to get her to go.  We do everything we can to keep her off her bed when she might need to go.  We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it.  This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.

This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting.  We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep.  I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.

Coincidence or not, Janey has been doing a fair amount of crying this week.  She cried a lot after school last night, and she woke up crying this morning.  Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?"  Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it.  Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?"  The answer was clear.  I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying.  I don't know why she does what she does with the bed.  But I know that I can control how I react to it.  I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her.  But if she does do the daytime bedwetting, I can deal with it in a matter of fact way.  I can keep myself from getting angry.  I can just accept that for now, that is how things are.

I told Janey "I'm sorry I got upset about you peeing on the bed.  I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up.  You don't need to cry about it.  It's okay"  Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something.  And she smiled, for the first time of the day.

I wondered, after Janey went to school, if I was doing the right thing.  Then I stopped myself from the worrying.  I reminded myself, as I've learned to do, that there is no right way with Janey.  There's no book that tells how to parent her.  I'm writing her book.  I don't know how the chapter on toilet training will end.  It might never end.  But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.

The last day of summer

School starts tomorrow, and I must say it's not a moment too soon.  I don't like summer.  I never have, and I don't think I ever will.  These last few weeks of summer with Janey have felt brutal.

I of course feel right away I must modify that.  There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry.  But in terms of sheer endlessness, these few weeks have few equals.

I have been taking the advice of a lot of my friends I've met here, and I thank them for it.  I've been trying to be easier on myself in terms of what gets us through the day.  TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that.  TV equals bad parenting, in my mind.  But in some ways, that is a selfish view, because for Janey, TV equals happiness, often.  She adores her shows.  Her default position in the house is in front of the TV, standing up and dancing and jumping.  She has strong opinions about shows, and even episodes of shows.  It's not random watching.  She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming.  I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart.  She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets).  She interacts with the shows, more than with people.  So---I am trying to relax and accept that.  But I'll admit it.  I feel like a bad mother when the day is mostly TV, often.

I think what most frustrates me is how hard it is to go anyplace outside the house with Janey.  It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits.  I want to get out of the house, but with Janey, it's so hard.  It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own.  It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene.  Taking Janey places is a two or more person job.  If there is backup, it can be great.  I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen.  If there's two people around or more, we've had some very successful outings.  But these weeks, it's been just me, and that's tough.  Again, I'll admit that makes me feel guilty.  I have an overactive inner voice, one that says "You are just lazy.  You aren't trying hard enough.  You just want to stay home and sit around"  I think it's time I told that inner voice to shut up and look at the facts.

We do one trip every day---the short walk to the "ice cream store", the convenience store near us.  I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me.  She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.

So, when I think about it, these weeks have probably been harder on me than Janey.  I think Janey is okay.  It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over.  That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege.  I talked to Janey's teacher for the year yesterday.  It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher.  I am looking forward to Janey's 6th grade.  I think she is too, as much as she looks forward to things.  So I say goodbye to the summer of '16.  I won't say good riddance, but I will say I'm ready for that goodbye.

The Weeks Inbetween

Janey starts school in a week and a half, on the Thursday after Labor Day.  Boston starts later than almost any school I know, but then of course they also stay in school much later, into late June.  Of all the weeks in the year, I'd say these weeks in between summer school and regular school are the longest feeling.  Especially this year---we had the early summer excitement of our trip to Ohio, and the later summer excitement of the big wedding, and now...nothing.  It's very, very hard to keep Janey happy during weeks like these.  Tony is at work, William is back at college and although Freddy is helping a good deal, he also is spending a lot of time with friends before he and they also go back to college.  So it's mostly Janey and me.

How do I fill the days?  I'll be honest, they have mostly been filled with TV and videos.  I don't know what I'd do without them.  It's not that I don't want to do other things.  But taking Janey anywhere on my own is so tough.  Yesterday, we did a trip to the grocery store, and that wasn't even just me---Freddy went too.  Lucky that he did, because Janey decided to fling a jar of salsa she wanted into the cart.  It might have been okay, but it hit a jar of spaghetti sauce and WHAM.  The cart and floor and all the food we'd already gotten was covered with salsa and sauce and glass.  And Janey was very excited by it all.  Freddy stayed with the cart as we waited for cleanup, and I took off with Janey to another section of the store.  We had planned to buy a lot more, but we grabbed a few things, salvaged what we could that was covered with sauce, paid for the lot and the broken stuff, and took off while the getting was good.

Early in the week, another big exciting trip, to the Rite-Aid drug store.  Janey was enjoying herself and being good until something upset her, who knows what, and she started to scream the ear-piercing scream.  It took all the calm I had to get her in shape to quickly buy my stuff and again, get out of there.

We've done some walks.  That's tricky too, as Janey will suddenly decide she's had enough, and that means she doesn't want to walk back.  I live in fear she'll get upset enough to jolt away from me and get hurt.  So we have to keep the walks extremely short, within sight of the house.

At home, I mostly serve as a show changer.  Some of Janey's shows are on Netflix, some on Hulu and some on Amazon.  Switching between them is a bit more than she can do.  She always knows exactly what she wants to watch, but the hard part is telling me.  We scroll through lists of episodes, and use a modified kind of sign language, where she points to the right or left to tell me which way to scroll, and then to herself when she finds the show she wants.  Then, because she often watches parts of shows, we have to figure out if she wants the show back at the beginning or where she left off.  It's about 50-50, but it's also 50-50 whether she'll say what she really wants.  "From the beginning" can mean "where I left off" and if I get it wrong, it's an automatic scream.

I don't mean to sound like a complainer here, although of course that's partly what I'm doing.  But what bothers me more than anything is that I feel like Janey deserves more.  I think it's a boring life for her at times like this.  I wish she was doing the kind of things I did when I was 12 at the end of the summer---spending nights at friend's houses, going for walks in the woods, reading and reading, playing cards with my sister, even working babysitting and in my mother's store.  By the time I was 12, my world was fairly open, as open as a pre-driver's world can be in the country.  Janey's world is very closed.  She has school and home.  I do feel good we went a few places this summer, but I still feel very sad at times that her world is so closed in.

I'll close with a picture of Janey doing her favorite thing during times like this, picking out a treat at the "ice cream store".  That's the highlight of her day, I think.  It's not enough, but it's something, and it makes her happy, and sometimes that is all we can do.

The Wedding

On Saturday, I was part of a very special wedding.  I was the matron of honor for my dear friend Julie as she married Craig.  These was a love story that started 37 years ago, when Julie and Craig (and I) started high school.  They both right away developed huge crushes on each other, but never dated.  Life and the ups and downs and highs and lows happened, and then they reconnected and fell in love.  I am so happy for them both.

Julie, her mother and her dog--all lovely!

Being part of their wedding was something that a few years ago, I couldn't have done.  I am so glad that Janey is at a place now that I could.  Still, I was a bit worried how it all would go.  I went up to Maine last Wednesday, so Tony had Janey alone for a few days.  He came up Friday, as did the boys, and we all went to a pre-wedding party on Friday night.  Julie and Craig were married just after dawn on Saturday (the rest of the family didn't get up for that part, but I was there, and actually flew into the ceremony, held on pontoon boats in the middle of a lake, on a sea plane with Julie---the first time I've flown in 30 years, and yes, I was terrified, but it was an amazing ride and a huge surprise to everyone waiting to see how Julie was going to get to the ceremony!) Then the reception was Saturday afternoon, at a lovely converted barn in the country.  So there was a lot for Janey to be part of and a lot for Tony, especially, and the boys to help her through, as I wasn't available a lot of the time.

Janey dancing with the best man

How did it go?  It went very well!  Overall, it was fantastic.  A huge part of that was the extreme kindness of everyone toward Janey.  Maine's slogan is "The Way Life Should Be".  Being from Maine, I know that there are parts of life there, like anywhere else, that are not the way life should be, but in terms of how Janey was welcomed---it was the way I'd like life to be for her.  She wasn't just tolerated, she was welcomed and included and delighted in.  I can't even think about it without tears.  At the party Friday night, the older brother of a high school friend taught her a cheer and showed her the lobsters that were going to be cooked and tried to get her to try a steamed clam.  A friend and employee of Julie's danced with her and showed her how to waltz.  Julie's nieces all made a point to talk to her.  At the reception, I can't even say how many people danced with her, talked with her, asked me about her and just plain made us all feel so welcome.  

Janey on the dance floor--her favorite place!

I have been lucky in that rarely has Janey been treated badly by the public, but there's a difference between not being treated badly and being truly included and befriended.  It's one thing to not stare, to tolerate, and a fully other thing to seek out a child like Janey, to see what makes her happy, to go into her world.  That is what I wish there was much more of in this world---not tolerance, but true inclusion.

Freddy and Janey taking a walk at the reception

Of course, every day isn't a party or wedding.  The reception was like a perfect storm for Janey, especially in that there was dancing!  Janey didn't want to leave the dance for, literally.  She screamed and pulled back when those dancing with her tried to take short breaks!  Tony and Freddy danced with her for LONG periods!  I never knew my husband and son could cut it up quite that well.  William and Freddy took Janey for lots of walks when she wasn't dancing, so Tony could truly enjoy himself at the reception too.  I was never prouder of my boys.  So many people commented on how good they are with Janey.

A rare picture of my whole family and my parents

Now---back to reality.  It's the few weeks before school starts.  It seems from Facebook like everyone else in the world is already back to school, but Janey doesn't start until the Thursday after Labor Day, so we have some time to fill.  It wasn't a bad summer, overall.  Summer school went well, we had the great trip to Ohio and this great past weekend.  Even so, I am always ready for school to start in earnest!

I'll close with many, many good wishes and lots of love to Julie and Craig, and to everyone who was so kind to us this past weekend!

Through the years we all will be together...

Easter Sunday was quiet at our house.  We don't visit family or friends, we don't go out to dinner.  Janey can't be around younger kids much, due to her aggression at times, travel to far flung loved ones is tough, and eating out...well, it's not worth spending a good deal of money to rush a meal, waiting for the meltdown.  So we stay home.  And truthfully, it's okay.  We are loners a bit.  But this year, both Tony and I were feeling a little emotional about our Easter.  It took us until about halfway through the day to realize it was the first year with neither boy home.  Our family felt small.

Janey was in a good mood all day, though.  We had fun early in the day taking a long ride into the city.  We love early Sunday rides, with little traffic.  Boston is a great city, when you take away the traffic nightmares, and we enjoyed driving through some neighbors, like the Little Italy of Boston, the North End, that we don't often see.  We all had some chocolate (Janey's early in the day, to prevent non-sleep!) from huge chocolate eggs that Uncle Pino gave us, and Tony got some of our favorite Gimbel's jelly beans.  It was a fine day, but I was still feeling low.

We aren't very religious, but I certainly wouldn't mind going to church on Easter.  We haven't found a church, though, that we can go to with Janey.  We want church to be a family thing, like it was with our beloved Hyde Park Congregational Church that shut down when Janey was two.  But there is no way on this earth Janey could be at a service, and there is also no way she could attend Sunday School without someone one on one with her.  So, we don't go to church, and that feels a little funny on Easter too.

Looking at Facebook during the day, I of course saw many pictures of kids at Easter gatherings.  I didn't make up an Easter basket for Janey, because she has never had any interest at all in that (or stockings) and because we would end up eating all the candy she didn't want, or she would end up eating chocolate bunnies and not sleeping for a week.  But I decided I wanted to take pictures of Janey for Easter.  I love taking pictures, especially of Janey.  I got out my iPad and used the Hipstamatic app, which has all kinds of virtual lenses and film that it picks at random each time you take a picture.  I adore it.  I took about a hundred pictures of Janey, to see what got picked and how they came out.

While I was in the middle of taking pictures, suddenly and unexpectedly, Janey began to sing.  She often sings a few lines of songs, but it's rare she sings the whole song, although she knows many by heart.  This time, however, she did.  She sang "Have Yourself a Merry Little Christmas", the whole song, in her otherworldly high and perfect singing voice.

I try hard on this blog to portray autism honestly.  Autism isn't a series of miracles, a savant hidden in an unexpected place, a innocent showing us all the way.  But in every child's life, including Janey's, there are a few moments that take the breath of parents away.  Janey's singing yesterday was one of them.  As she sang "Through the years, we all will be together, if the fates allow...", I cried.  And held her close.  She had sung the song, that, if not seasonal, most perfectly captured the mood I had been feeling all day.  For that moment, our troubles were indeed far, far away.

A Tale of Two Weeks

As we put Janey on the bus this morning, watching her sing and skip her way happily out the door, we shook our heads when thinking of how drastically her behavior can change from one week to the next.

Last week, for about 5 of the days anyway, was incredibly tough.  Janey was screaming almost from morning to night.  Nothing made her happy.  She wanted only to watch videos, and then to frantically change to another video the moment the first one started, and to ask for food and then want a different food the minute we got it.  Even car rides, usually the last resort that always works, didn't always work.  We were in despair.

And then---a transition period leading to back to school.  This week, I've gotten good reports from school every day, and home has been a delight.  Truly, truly a delight.  Janey is all smiles.  We are having a huge amount of fun with her.  She's getting into new music every day, and last night, coming back from a ride with Tony, they were both singing songs and laughing, bonding in a way that had nothing to do with autism and everything to do with just liking the same things.  The few times she's gotten a little upset, one play of her favorite new song (Immigrant Song by Led Zeppelin) has cheered her right up.

Janey's school, not fancy, but a great place

What happened to cause the huge turnaround?  Well, the big one is school.  Janey is far happier with a school routine.  Her teacher, Ms. Erin, is great, as are all the staff members I've met.  Janey is a challenge, even in her autism-only program.  But they meet the challenge and constantly think of new ways to work with her.  And we, having the time she is at school to regroup, do better dealing with her once she gets home.  I think other factors helped Janey move out of her funk, too.  One was me going away, and just having a change of parenting for a bit, and then going on an overnight treat trip to the great inn we were at.  The weather made a difference.  Janey needs to be outdoors as much as possible, running around.  But all that doesn't quite explain the change.

I think a good percentage of what drives Janey to be happy or be sad is something we just don't get.  She might have pains she can't explain to us.  There might be something worrying her that she has no way to tell us.  She might be having a flare-up of OCD type thoughts and needs---that seemed to be showing itself in the subtle ways it does with her last week.  She could be bored.  She could be angry.  She could just be a pre-teen annoyed with having to spend so much time with her parents.  Often, there is just no way to know.

Tony and I talked this morning about how we should approach another tough spell.  There are some things we can do.  One big one is changing things up.  If she's in a terrible stretch, maybe we can somehow go away for a night, or take her on a big day trip somewhere new.  We can, if the weather at all permits, get her to a beach---that seems like therapy to her (and to us)  We can't make school start back up, or help her with issues we don't know are happening, but we can ride it all out, with hope that it won't last forever.  That might be the key.  When you are in the middle of a horrible week, it is hard to see past it, or to remember there was ever better times.  But the bad times, overall, are not as frequent as they once were, and spring is coming.  We'll get through this winter.

Road Trip

This past weekend, we took Freddy back to college in Saratoga Springs, NY.  We were going to make it a one night trip, but with the early week reports of the blizzard possibly hitting Boston, we added Friday night on.  The blizzard didn't hit, but the two nights away made for a good little getaway.

Janey did extremely well with the trip overall.  There were many great moments.  She loves hotel rooms, and we stayed in two different ones (as it was too late to add a second night to the first one we booked).  She literally danced around with joy at her first sight of each one.  I've heard a few other parents of kids like Janey say that their kids love hotels, too. I'm not sure why.  Part of it with Janey is that hotel rooms tend to have lots of mirrors, and she very much enjoys mirrors, but I think part of it is just having a new little pocket world to explore.  She can go anywhere she wants within the room, and that gives her something new to explore on her own---something she doesn't get a lot of.

When we ate in public on the trip---one trip to Wendys and one to the hotel breakfast buffet, and when we went to the Target to get Freddy some last minute things, I realized something interesting.  It doesn't bother me when Janey gets stared at anymore, not really at all.  She was stared at plenty, but although I noticed it, I was able to pretty much ignore it.  Or else I thought "Yeah, here's one of those kids with autism you hear so much about in the press, live and in person!  Feast your eyes!"  It was a bit of an in your face attitude I felt, and believe me, that is not an attitude that comes easily to me.  But as Janey gets bigger, she stands out more and more, and unless we keep her out of sight at all times, she's going to be stared at.  And...so be it. Especially in the Target, there were plenty of odd people that I think warranted more staring than Janey, but that's life.

I also noticed during the trip that we are better able than we used to be to set aside tough moments and remember times as positive.  There were certainly screaming moments on the trip, times that Janey for no reason we could see just lost it and screamed and bit her arm, times that she was quite unhappy.  But we know now that usually, unless something big is going on, these times pass if she's in a generally good mood.  She said one of her longest sentences in a while when looking in the mirror---"I have one blue eye and one big eye"  She actually has two blue eyes that look the same size to me, but it was a cool moment to hear her thoughts while looking at herself.  She also did a lot of singing and dancing---always fun to watch.

As the years go by, I think we are learning to meet Janey in the middle.  For someone with typical kids only, this trip might have seemed like not much fun.  We did little outside the hotel rooms or the car.  We drove around a lot, as Janey loves that.  We did get out to dinner, just Tony and me, on Saturday night---thanks, big brother Fred!  We dealt with a few meltdowns, but we also laughed a lot.  Our lives with Janey are never going to be mainstream.  She's going to be stared at, she's going to scream at times, we aren't going to be able to do typical getaway things.  But we will also have the fun of watching her joy at little things, and the freedom, in a way, that comes from having a preteen that still gets a thrill out of being with her parents doing not much. We'll keep on going, and take our fun where we can get it.

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.

The trip to Maine---a (mostly) success story!

When the boys were little, we did a lot of little getaway trips.  Not a lot of long vacations to real destinations, but quite of a lot of trips where we'd find a cheap hotel deal and spend a few days in a new location, visiting friends or family.  But for the last five years, we have taken no trips like that.  None.  We have not gone away as a family in that time for more than a few quick, close overnight twice.  We haven't been more than 100 miles from home as a family, or gone more than one night.  About a month ago, when Janey was doing pretty well, I decided I very much wanted to try a little trip.  I grew up in Maine, and Maine in the summer is a special place.  I wanted Janey to at least have a day, or even an afternoon, playing outside in the Maine summer.  My parents live in Maine, and I set my goal at a day at their house.  I reserved a hotel about half an hour from them (because close hotels, near the coast, are out of our price range in the summer), for two nights, and set aside 3 days for the trip.  I wanted us to have a full day for travel both ways, although it's about a 4 hour drive, so that if we needed to stop 50 times, we could.  I wanted to have very, very few plans, so that our main focus could be on letting Janey relax and hopefully enjoy the trip.  I felt like if this went well, and she saw that going away could be fun, it would be a good start to expanding our horizons a little.  But if it didn't, it might be the end of that part of our lives for a good long time.

Then came the hell weeks, which you've probably read about here.  I thought over and over about cancelling the reservations.  I thought there was no way that this would work, that her crying would get us kicked out of the hotel, that she would destroy my parents' house, that her behavior in the car would make us unable to drive.  However, once the new medication had shown a little promise, I thought we might as well give it a try after all.

Well, I'd call it a modest success.  The ride up was quite good.  Janey didn't cry AT ALL until the last 5 miles or so!  She did sleep a lot, still tired from the medication at that point, and she wasn't terribly smiley or happy, but she was not crying.  Here's a picture of her at a rest stop...

having some ice cream.  We made it to the hotel well before I ever thought we would---we only stopped about 3 times, as much for us as for Janey.  I was worried how Janey would react to the hotel, but we kept talking up how we were going to go swimming as soon as we got there, and we did...

The pool was only 4 feet deep, was outside and full of bugs and very cold, but we swam!  Janey was fairly happy to swim---not as excited as that sometimes makes her, but happy.  We spent the rest of that day in the hotel room, just hanging out (although I got to go out to dinner with my dear friend Julie while the rest hung out!).  Tony got to watch baseball with Freddy (we don't have cable at home to see it) and Janey got to go about 5 times to the "chips machine", the vending machine, and get chips.  I figured that if that's what meant vacation to her, then getting a lot of chips (which she wasn't really so much into eating, just getting!) was fine.  She also enjoyed pushing the buttons on the elevator.  She didn't sleep at all well that night, though, probably from sleeping in the car a lot, but she wasn't screaming---just wandering the room and enjoying some cable.

The next day, we went to the hotel breakfast and then to my parents' house, and as I had hoped, it was a beautiful day and Janey had a wonderful time outside.  She was able to wander around their big, wooded yard and to walk down their dirt road, and to pick wildflowers and see all the bugs and just enjoy that smell of Maine in the summer.   Here's a few pictures...

I wish she had been more excited or happier---she seemed subdued, but she wasn't crying, mostly, and I think she was partly subdued just taking it all in.  For a girl that loves outdoors, having that much of it just to look at and walk around in was probably almost overwhelming.  She liked a few of the toys my mother had saved for her---here's her enjoying a Clifford book on the deck...

and overall, I felt very happy that I was able to give her that day, a tiny piece of my summers in Maine.  As soon as we were all getting a little tired, we left, while everyone was still in a good mood.  We went back to the hotel, and lucky me got to AGAIN go out to dinner with my friend---another great part of the trip, getting some time to just talk and laugh and be silly with a dear friend!  Janey slept better that night.

Today when Janey woke up, I saw a Janey I hadn't seen in quite a while, and was very happy to see back---a smiling, laughing, energetic, funny girl.  She was in one of the best moods of the summer---singing her song parodies, thrilled about anything we were doing, even little things like going to the hotel breakfast...

just being the Janey in what we call her "precious" mood---one of the times I can't possible imagine enjoying her more.  They are rare, but I had worried the medication might take them away, make her quieter and more subdued all the time.  I love my lively girl when she's a happy lively girl!  

The drive home wasn't fantastic.  I think Janey had had enough of driving, or maybe she was realizing the "jolly holiday" (a term she picked out of a Mary Poppins sing-a-long song to define our trip) was over.  She cried a fair amount, and we stopped less---perhaps we should have stopped more, but I think we thought by that time just getting home would be best.  Here's a picture from one stop, with a moose...

Janey wasn't in the best mood, but she agreed to pose!  

So I'd say overall, a success.  I wish Janey had been happier more of the time, not just not crying but actually happy, but there were certainly happy times, and we made it!  I was able to get some time out, and my parents were able to see Janey and Freddy (this also marked our first family trip without William, as he is at college, and incidentally having a better time than he ever realized it was possible to have, by his reports).  I think we'll try to do it again fairly soon.  It felt good to be a little back on the road again.