My mother has Lewy Body Dementia

 I've been writing less the past few years, and with my mother's permission, I'm going to write a bit about one of the reasons for that.  She was diagnosed about a year ago with Lewy Body Dementia.  It's a new challenge for our family, but in some ways, it feels familiar.  Janey's autism has prepared us in some ways for this new phase of our life.  

I'm no expert on Lewy Body Dementia (LBD, I'll call it for a shortcut), but here's a few things I've learned.  It's the 2nd most common cause of dementia.  It's related to Parkinson's Disease often---my mother was first diagnosed with Parkinson's Disease Dementia, and she has some features of Parkinson's.  It affects people differently than Alzheimer's Disease in some ways.  For one thing, it's much more variable.  Some days, she seems barely affected, other days, much more so.  It affects speech and memory less than Alzheimers, but affects other areas much more.  For example, she cannot understand time at all any more.  She often thinks it's day when it's night, or vice versa, and something like telling her we will be there to visit tomorrow is beyond what she can understand.  Anything that takes any steps at all to do, like cooking or cleaning or even the things she was always the best at, like reading or playing the piano, are near impossible for her.  And she hallucinates a lot---one of the hallmarks of LBD.  Almost every night, the house is filled with people that only she can see.  She often makes my father whisper, as to not bother the visitors.  She is very, very anxious.  A lot of this is focused on their cat---worrying where the cat is, not wanting to leave the house even for a minute as to not upset the cat, etc.  There's more, but that gives an idea what is going on.

As she starts to require more care, I'm often torn in two.  I can't do all I wish I could do for her, because of course Janey needs me too.  Tony is a wonderful caregiver for Janey, but he can't do it alone.  We are visiting Maine much more often, just to check on things and to give my father a little break, and I call them several times a day, but even if their needs become greater, I'm not going to be able to do as much as I am sure many people do for their parents in similar situations.

There are some parts of the dementia that are easier than they would have been if I hadn't been Janey's mother all these years.  Cognitive impairments are not hard for me to see.  I don't mind the days my mother has trouble talking, or when she gets confused.  I don't mind repeating things, or explaining things carefully.  She is able to tend to self-care things mostly still, but if she stops being able to, that is also something I have experience with.

I think the part that is harder for me, though, is seeing her regression.  That can bring back the hardest thing I've ever experienced---seeing Janey lose the skills she had before she was 3 and never get them back.  My mother was accepted to Harvard (Radcliffe, then, although she chose to go elsewhere).  She was a professional musician, and she read day and night, ran a successful business for years, had the energy of ten people.  And that is all ebbing away.  It is heartbreaking to see, in many ways, as it was heartbreaking to watch Janey lose her language as a three year old.

To say I feel a lot of stress lately is putting it very mildly.  A pet peeve is reading articles about what you can do to avoid dementia later in life---something I want to do, obviously.  They all talk about avoiding stress as being so important, as well as getting enough sleep---as if those are thing that are within my control as a parent of an autistic adult.  

Something I think so often (as Tony can vouch for---I think he's sick of hearing it), something all this has taught me---is to enjoy the now whenever possible.  When Janey is having a good day, when my mother is having a good day, whenever I am able, I do things I like and don't feel guilty doing so.  If we have a choice between planning for some big goal in the future or doing something to live in the now, I pick the now.  I am so very aware that the now is all that is guaranteed.  

I will write more about Janey the next time I write.  She will be 21 in less than two months.  We are approaching the "falling off the cliff" age of 22.  So there is a lot to think about there.  But for now, I'll leave you with this picture of Janey from our trip a few days ago to Maine, to see my parents.  I love being in Maine in the summer, and sharing what that is like with Tony and Janey.  Thinking as always of all of you.

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.

Summer without dread (mostly)

Smiles on the train

Tuesday was Janey's last day of school, and I kept thinking it didn't feel like the end of the school year and the start of summer.  After some thought, I put my finger on why---I didn't feel dread.

Of course, I feel guilty saying that.  It doesn't fit with the idolized autism mother I always compare myself to.  I'm not supposed to feel dread that school is over.  I'm supposed to feel happy, energized, ready to enrich Janey's life with all kinds of helpful and fun activities.  But every year up until this one, I felt dread instead.  Dread of long days full of tears, days where my good intentions to do all kinds of interesting activities with Janey ran up against the fact she didn't want to do those activities, or her behavior was such that I couldn't do those activities with her alone.  Dread of the feeling in mid-afternoon where all that keeps me going is counting the minutes until Tony gets home and I can collapse and have ten minutes to myself.  Dread, mostly, for Janey---for the unhappiness that I can do nothing about often, for the boredom I fear that she feels, for the confusion I worry she has about transitions like school to summer---dread of a summer that I always feel falls far short of what I want her summers to be.

Rest with William on the grass

However, this year, the dread was almost non-existent.  A lot of that is that Janey is just plain easier and happier than she used to be.  It's a rare day that she screams and cries all day.  It is possible, now to take her out in public even on my own at times, and certainly with one other adult.  But the other part is a change in my own attitude.  I have you, my dear blog friends, to thank for that for that to a large extend.  Last year I wrote about my guilt over the sameness of Janey's days when there isn't school, about how the highlight of the day is often just a walk to the corner convenience store, about how many videos she watches.  I was comparing her summer life to my own at her age----by the time I was 12, I worked at least part of every summer, I spent tons of time on the ocean, I did things with friends and read and biked and all the things that summer in Maine in the 70s and 80s meant.  But that was my life.  And you all reminded me that Janey might be quite content with her days as they are---that I should not feel guilty about what got us through the day---that a walk to the store for her might be like a walk along the coastline was for me.  I took what you all said very much to heart, and it helped me a huge amount.

Picking out a donut

So---I'm feeling better about this summer.  I've taken a few other steps to help too.  Tony has arranged his vacation time around Janey's summer school, so there are not long periods of time with just me at home.  I've figured out that making sure Janey gets a lot of walking exercise in early in the day leads to more relaxing afternoons.  I'm keeping the house very well stocked with foods she likes, and we are walking to the corner store several times a day.  And I'm letting her watch videos as much as she darn well pleases, and not feeling any guilt over it.

Yesterday, William and I took Janey into the city on the commuter train.  I would not have dared to do such a thing in the recent past.  It went fairly well.  We let Janey pick where we walked, and that resulted in an interesting random ramble around downtown, eventually into a small park with a fountain.  Janey said "I want to swim!" and I rolled up her pants and took off her shoes and she waded in the fountain for a long, long time.  And I didn't care that she got some looks for the financial world type people that were all over the park.  I enjoyed people-watching them, so the looking was two-way.  We met Tony to take the train home with him after work, and then I took a long nap.  If the summer can be like yesterday---not too bad, guilt-free and with Janey at least neutral if not happy all the time, I'm going to call it a success.

South Station, Boston

Walking along the Rose Kennedy Greenway

Thank you, Janey, for being such a cool kid

Last night, Janey, Daddy and I had the probably ill-conceived idea of ordering Thai take-out from a town four towns over, on a rainy and traffic-filled evening.  You were up for it, because you are always up for a ride in the car.  You were excited just to be going someplace with your parents.  That's not something every twelve year old girl would be, my sweetie.

I did your hair while Daddy ordered.  I put it in strange Pippi Longstocking braids, because it's so thick and curly that braids stand out to the side.  Then I clipped them together on top.  It looked very elegant on you, Janey, but then again, you always look beautiful.  I told you how lovely you looked, and you admired yourself in the mirror.  You aren't going through that stage a lot of girls do, where you put yourself down.  You know you are beautiful.  I love that about you.

In the car, we got caught in traffic.  But you didn't care, because we were listening to music.  I was using my Slacker Radio app to find many, many versions of "King of the Road", a song you love and I love and my parents loved growing up and in fact a lot of people growing up liked, because it mentions Bangor, Maine, and not many songs growing up ever seemed to know Maine existed.  You don't love it for that.  You love it for the beat, the rhythm, the pacing, whatever it is that makes you able to pick out great songs and enjoy them.  When the versions I played strayed too far from the original, you said "Music, please, music!" letting me know that I wasn't playing Music with a capital M.  You know what you like, and you have great taste.  You mostly like the Roger Miller version and the Randy Travis one, and those are the best, I agree.

On the way back, we played another song you love---"If I Were a Rich Man" from Fiddler on the Roof.  There, I found a version by a woman with a Cyrillic name, a jazzy version without words, instead just repeating the "dabba dabba dabba do" type scat to the tune all the way through.  It's something I would have never listened to, but you loved it and asked for it over and over.  By the third time, I liked it pretty well too, and so did Daddy.  You aren't influenced by anyone else.  You like what you like, and that is great.  We all moved to the beat in the car, driving in the dark and rain, our own little world.

At home, you tried all the Thai food, because you always try everything.  You are an adventurous eater, far more than I am.  We watched "Family Feud" on the old game show channel, and you didn't object or cry for your own shows.  I think you're even getting to like Richard Dawson.  Without us really noticing, you are gradually allowing Daddy and me to do the things we enjoy more and more.  You are growing up.

When you were tired, you said "Snuggle on Mama's bed?" which is what you say every night.  Mama's bed is actually your bed, but we know what you mean.  I lay down with you as you played a little iPad and then fell asleep.  It was your usual bedtime, around seven.  You sleep when you are tired, and you are usually a good sleeper.  Daddy and I stayed awake about another hour, and then we went to sleep too. You're a morning person, like your father and William.

Janey, I know it's very unlikely you'll read this.  You can't read, and if I read it to you, I don't know if you'd understand most of it or not.  And that doesn't matter.  That doesn't make you less interesting, or beautiful, or opinionated, or cool.  I won't pretend it is always easy helping you live the best life you can.  It is hard, a lot of times.  I won't lie and say I don't wish sometimes life would be easier for you, or for us.  But you are one incredible kid.  I love you, Janey.

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!

Little getaways, now surprisingly possible

This past weekend, we took a little trip to Maine. We stayed a couple nights at a hotel, and got to see my dear Aunt Sarah, my mother's younger sister.  I haven't seen her in eight years, and she hasn't seen Janey since then, so it was wonderful to see her.  What was also wonderful is that the trip was even possible.

A year ago, or pretty much any time in the past eight years, we could not have pictured a weekend trip working at all with Janey.  We basically took no trips during that time, at least the kind that involved a good deal of driving and time in a hotel.  Janey would never have tolerated the drive, and a hotel would have been a nightmare, as she would have been almost certain to scream so much that we would have been kicked out.

The inability to travel with Janey was hard.  Tony and I love travel---not big time exciting vacations, but weekend or a little longer trips, the kind where the biggest entertainment is seeing new places from the car window, where we get fast food to bring back to the hotel, where we see family or friends for a bit and just relax for a while.  We did that kind of thing a lot with the boys when they were younger.  We saw a lot of the Northeast during that time, and had a lot of fun swimming in hotel pools and eating at rest stops.  We wouldn't even have wanted to take Janey to Europe or Disney World or on a plane, but we did long to just be more able to go to see my parents in Maine for the weekend, or something like that.

Tony and Janey on a little stretching legs stop at China Lake, Maine.

Something happened this summer.  Like we often date Janey's autism to the only very big family trip we ever took, a cross-country drive when she was three, we are dating this change back to Janey's long hospital stay from a burst appendix.  Janey seems changed.  There are still tough days, lots of screaming times---we aren't under any illusion that life will be easy-breezy from now on---but somehow, it has become possible to travel a little with Janey.  A big part of it is she now loves car rides, just like Tony and I do.  She's happy in the car for almost unlimited amounts of time, as long as music is playing and we keep moving.  She also, based on this trip and our last trip to take Freddy to college, likes hotels.  When we got to our hotel in Maine on Friday night, we worried about the noise for a very different reason than we would in the past.  We worried her yelps of joy would bother people.  She was overwhelmed with happiness to be in the hotel room.

Thinking about it, it's partly that Janey has changed, but it's also partly that we have changed.  It's sort of like a compromise.  We do what Janey likes, more and more.  For example, the music in the car is all for Janey.  Luckily, she likes a wide variety of good music, but if she doesn't like a song, we don't listen to that song.  We plan our days so that she will be content.  Yesterday, Tony stayed at the hotel much of the day with Janey, doing little drives to get food and letting her dictate the day's pace, while I spent time with my parents and aunt.  We didn't try to do everything with Janey in tow.  Later, we went to my parents' house, but as soon as it was apparent Janey was tired and ready to go, we left.  We all got to do some of what we liked, by making sure Janey was able to feel comfortable and happy.

It feels like a bargain, a trade.  We are getting what we want---the ability to do more of what we enjoy, and Janey is getting what she wants---her needs put first.  It's a win/win---a nice example of a rare win/win in life.  It's making us able to look at the future with a little more hope than we have had in a while, thinking of seeing the country a little at a time, in our own way.  It wouldn't be the two of us, as we daydreamed about years ago---it will be the three of us, and I think we can make that work.

With just a little editing....

Janey, Freddy and I went up to Maine to visit my parents for four days, last Saturday through Tuesday.  My parents live in midcoast Maine, where I grew up, and I hate to have a summer go by without visiting there.  There is something about the summer in Maine that simply can't be found anywhere else, and I want my kids to know a little of that, especially this year Freddy, as he heads into adulthood---he will start college in eleven days.

Janey and the chickens

How did it go?  Well, with a little editing, it went well.  I got to show Freddy a lot of the places that I loved growing up, and he got to spend a lot of time talking with my parents.  Janey loved running around barefoot outside, talking a long walk with Grampie, singing along while Nana played the piano and running around after my dear friend Julie's chickens.  I got to take a lot of deep breaths of Maine air, and of course I took too many pictures, literally over a thousand.

What gets edited out?  Screaming, mostly.  Janey had many, many screaming spells.  They came on suddenly and often without any reason we could figure.  They were intense and overwhelming.  My parents live on a back dirt road, but they do have neighbors, and luckily, they had talked to the neighbors about Janey, or it well could have been thought something awful was happening to her.  The most severe editing dealt with a drive we took up Mt. Battie.  Mt. Battie is really a hill, but it has a view worthy of any mountain on earth, of Camden Harbor and all kinds of islands.  I wish I could have enjoyed it for more than a few moments, but something there triggered Janey and she flipped out and was hysterical, and bit me pretty hard.  We left fast.  Later on that drive, she did all she could to bite and hit Freddy, next to her in the back seat.  It took both our strengths to keep her from hurting him.

The briefly seen view from Mt. Battie

Janey, Nana and Grandpa

Freddy and I can look back on the trip and feel pretty good about it.  I'd say 80% of the time, Janey was fine, and sometimes, she was more than fine---she was a delight.  But that 20%...I don't think much of anyone except someone who has lived this life for a while could edit it out as we do.  My parents did a very good job with Janey, but they were shaken.  Like many people who see Janey's intense moments, they wonder how it's possible to keep going.  They worry about her safety and our safety.

So---is editing a good idea?  Should we do it?  The question is more if we could stop doing it if we wanted to.  If I thought all the time about the awful moments....well, at the very least, I wouldn't enjoy the good moments.  I have to edit in my mind.  I have to think about Janey's delight running after the chickens, the fun of hearing her surprise my parents with yet another song she knows, the wonderful moment when she saw Daddy again and said, confused about the exact terms, "It's your brother Daddy!"  Reversed pronouns and muddled relationship names aside, her voice showed how she felt.

We can edit, and can be left with memories of a good trip.  But the larger world can't be asked to do the same.  And more importantly, I don't know if Janey can do that editing.  How does she remember things?  Does she remember the good times, or remember the scary, out of control times?  How would she tell me she felt about our time in Maine, if she could?  I don't know.  I really don't know.  I hope she would understand that we are trying hard to give her a good childhood, and that we are doing our best, and that we would do anything within our power to ease the tough times for her, if we knew how.

It's all stored up there somewhere!

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

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

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

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

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

Janey in Maine---a tale of little sleep

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

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

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

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

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

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.