Summertime Blues

 It's been a rough start to the summer with Janey.  We are seeing behaviors we haven't seen for years---long days of screaming, lots of arm biting which comes close to breaking her skin, crying for hours.  It's not every minute of every day, and there have been a few better days mixed in, but overall, it's certainly been a tough time.  

We really have no idea what is causing this unhappiness.  Some of it is probably just the change in routine that the end of the regular school year brings, but it hasn't been this extreme other years.  Janey had quite a good year of school, overall, and most of the time enjoyed the new after school program.  I imagine it was hard to have it all be over for the summer.  We tried hard to make the weeks before summer school fun for her.  We did a trip to Maine to stay in what she calls a "hotel house"---usually something that makes her very happy, but this trip was mixed to say the least.  It was very, very hot in Maine, and we mostly had to stay in our air conditioned room.  Janey liked the unlimited showers in a nice big hotel shower, but off and on, she screamed and cried loudly.  

During one of these screaming sessions at the hotel, as we tried everything we could to calm her down, I had a horrible flashback to the time we were in Children's Hospital waiting for a placement at a psychiatric facility, when Janey was 10.  It felt suddenly so much the same---being in a room we really couldn't leave (this time due to 100 degree heat), having to keep Janey quiet (this time because we didn't want to disturb other guests or get that fun call we've gotten a few times from the front desk asking if everything is okay), not being at home where we have more resources to help her---it was awful.  I felt like I was in despair, a feeling I haven't had because of a situation with Janey for a long time.  

The picture shows one of Janey's happy moments at the hotel, of which there were a few, but moments like that lately seem to change on a dime.  

Now Janey is in summer school, which is never her favorite part of the school year.  She goes willingly, as she always does for school, but most days she is getting off the school bus and breaking down.  We always consider just not sending her to summer school, but....

The other big issue is the one that isn't new---Janey's sleepless nights.  The past week, there were 3 nights out of seven that she literally didn't sleep at all.  Needless to say, Tony and I didn't get much sleep either.  After a night like that, we are left feeling barely human.  Any respite at all is so desperately needed that any thoughts of not doing summer school are put aside.  We put her on the bus and collapse.  She, meanwhile, usually seems to feel just fine without any sleep.  Sometimes her days after not sleeping are her better days.  We very much need to try to figure out why her sleep is so variable.  We do know that genetic testing showed she has the genes for a very rare sleep disorder---one that only about 100 families in the world have---but Tony also has the gene, and he doesn't have the sleep issues she does.  It's a rare enough disorder that there isn't much information on it out there, and we have been putting off joining a study about it because, well, we are just kind of overwhelmed and not really ready for all kinds of medical tests that would involve, but we probably need to join the study, at least to try to understand what's going on more.

On the uncommon days lately that Janey is happy, we have seen something we often see when she's been having a very tough time---improved talking.  It's strange how that seems to follow or be interspersed with tough times.  She's asking for specific songs she wants to hear by name, she's using a little bit longer sentences, and she's doing something new.  When she asks me something like "want to go for a car ride?" and I say "you need to check with Daddy about that" (I don't drive anymore), she will say something like "I will ask Daddy 'Daddy, want to go for a car ride?'"  She rehearses what she will say.  She's done this 5 or 6 times, and it really blows me away.  It's like a little glimpse into her thinking, something we so rarely get.

I hope these tougher times are just an blip, that the easier times we've had for a while now will come back.  Like the flashback in the hotel room, it's so easy to fall right back into the old feelings of hopelessness when faced with screaming and crying.  And it's so hard to have the energy to do all we can to keep her happy when we don't get sleep.  Hopefully, as this hot and restless summer bears on, things will get easier, for us but most of all for Janey.  

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

Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

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.

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!

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.

Back from the end of my rope

Last week was school vacation week here in New England.  It couldn't have come at a worse time.  Janey had been in a mood for a few days when it started.  She was on edge, screaming much of the time, not happy at all.  Then, the first weekend of vacation, it got extremely cold, the coldest it's been in Boston since 1957.  It wasn't the kind of weather we could get Janey outside in.  She was displeased.  She spent a few days switching hysterically from one video to another, screaming when we didn't immediately understand her, biting her arm and generally being very, very unhappy.

I had planned for quite a while to get away for a few days during the vacation week.  Tony had taken the week off work, as it's been a traditionally very hard week for years.  I was planning to go up to Maine and visit my parents on Wednesday, and then Friday have a long-awaited special treat getaway weekend at an inn as a early birthday gift from a dear friend (thank you, Julie!)  I was (and am) looking down the barrel of, let's just say, a milestone birthday, which would have been stressing me without any tough Janey times.  And I kept thinking---I can't go.  I can't leave Janey here with Tony alone.  But on the other hand, I kept thinking---I have to go.  I NEED to go.  I felt at the end of my rope, hanging on by a single thread.  Each time Janey screamed, I tensed and felt waves of stress and despair wash over me.  I felt like I couldn't take one more second.  But I kept telling myself "I can't go.  I can't leave Tony to deal with this"  Tony, who I will right now nominate for husband and father of the year, kept telling me I should go, that he would be okay, that he'd manage somehow.  It's hard to even explain my state of mind as I tried to decide.  It wasn't sane.  But finally, after getting Tony to promise that if it was too hard, he'd call and I'd come back, I did go.

And Janey was fine.  Not perfect, but fine.  She often seems to do a little better when it's just one of us with her, because all the attention is focused on her, we think.  Tony took her for lots of rides, changed her videos as demanded, and slept when she slept.

Janey views the sunrise

It took me a little while to calm down once I left.  I took a bus to Portland to meet my parents, and the bus ride helped.  I sat and decompressed, and played word games.  By the time I reached their house, I was much, much better, and by the next day, I felt great (although I woke with a horrible headache, probably from all the days of stress)  It was great to have a few days with my parents, and then a few days at an amazing inn with my friend and her fiancee.

Crescent Beach, Cape Elizabeth, Maine

Tony and Janey came up to the inn on Saturday night.  Tony got a chance to relax hanging out with the friends, and I took care of Janey, and by the time she got there, I was looking forward to seeing her very much.  I felt able to cope again, to think of ways to keep her distracted and happy.  We had several showers in the room's huge shower, baths in the big bathtub, we walked to the empty beach at sunrise, we spent time at the bonfire outside in the evening.  We had fun, because I was able to relax enough to have fun with her.

I learned a lesson, one I've tried to learn before, but I think this time it really will stick.  Sometimes, I really do need to take care of myself to be able to care for Janey.  I don't need to be a martyr to care for Janey, to love her.  We don't have a lot of respite, but Tony and I can switch off at times and allow the other party to get a breath.  And Janey will manage.  The toughest times don't last forever.  They come and go.  And I am much better able to to be a creative, patient mother if I am not at the edge of the cliff.

Now, to face tomorrow's birthday and the start of being AARP eligible.....

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.

In The Driver's Seat (Guest post by Janey's daddy!)

For the first time ever, my husband Tony wrote a guest post!  It's written as a letter to Janey, to show appreciation of the changes that have allowed us to travel a bit more lately.

Thank you, Janey!

For the past four months, Janey, you have allowed me to be in the driver's seat of Daddy's car. Almost every day, I take you on at least one car ride, because you want me to play music for you in my car's disc player. This is something you have wanted me to do since you came home from the hospital, after you were very, very sick from your appendix bursting.

You like these car rides with our music that I play for you so much that you seem to also enjoy your bus rides to school in the morning and the afternoon bus rides when you come home from school.  A lot of times you run happily onto the bus in the morning, and Mama tells me that you run off the bus all happy in the afternoon and bolt right into the house.

Daddy's car rides with our music seem to make you so happy, even after you have been very angry or sad, that your brother William said to me, after he came along with us once, "wow, it's like giving Janey medicine." 

Most times our drives together are about an hour long, but sometimes, you and Daddy like the music so much that we drive for two or three or more hours. You hear some songs, like Santana's "Soul Sacrifice" from Woodstock in 1969, or The Ventures' "Wipe Out" from Tokyo in 1966, and you soon look like a humming bird as you drum your arms so fast out of happiness that they become a blur!  Sometimes Daddy and Mama think that our old car is breaking but it's really just you dancing and rocking so fast in the back seat!

And when we drove far away to take Freddy to his new school in New York, and to Maine to see Nana, Grandpa, and Aunt Sarah, you were so nice and happy in the car with our music playing, even when we were stuck for a long time in silly Massachusetts' traffic! And you were so good and happy in the hotel houses we stayed in.

And Janey, you put a big smile on Daddy's face whenever you come up to me now and say the first words of a song you want to hear on the next car ride, like, "You want to hear "generals gathered in their masses"?" That song is called "War Pigs" by Black Sabbath, which you like because your brother William has played it on his guitar and sang for many years in his room.

Mama has made you many music discs and put songs on your iPod since you were a little girl that we now play in the car, like "Angels We Have Heard on High" and Johnny Cash's funny song "In the Jailhouse now." And Janey, when you want to hear "Folsom Prison Blues" and you make your voice sound lower and say "hi, I'm Johnny Cash," you do that so well! We play songs "Beat It" and "Bad" from the disc Freddy gave to you for Christmas.  And you laugh a lot when daddy plays Weird Al's "Eat It" and "Fat." Daddy laughed so loudly when you said to me "you ain't fat, you ain't nothing!"

Janey, I hope we don't get too much snow this winter, because I still like to drive you around!

Again, thank you, Janey!