The Summer Without Sleep

It's about 11:30 pm now.  Janey is awake, wide awake, watching TV.  Last night, she slept not at all.  This used to be an unusual, shocking thing, that she could go totally without sleep all night now.  It's not any more.  In time since school ended for the year, there's been about six nights without sleep, without ANY sleep.  There was one last Thursday, just five days before last night's non-sleep night.  I hope there's some sleep tonight.  It seems like there would have to be.  But maybe not.

What is going on?  For most of Janey's life, sleep has been one of her lesser issues.  There were always occasional insomnia nights, but not a huge amount, and very rarely ones with no sleep.  Something changed recently.

I don't have a lot of theories.  One of the few I have is that it's just her age.  She is almost 15, and that is an age you start staying up later.  I've read that it's theorized it's biologically hard-wired, because it gives teenagers a time to relate without older or younger people awake, and that leads, indirectly, to the human race continuing.  Maybe Janey is feeling that draw, to be up at night when others aren't.  But while most teenagers might realize not to take it too far, to eventually sleep, Janey doesn't.  She just stays awake.  And she doesn't get the desired alone time.  We can't leave her alone.  If she's awake, we are awake, or trying hard to be awake.

If Tony hadn't retired early, if he had to get up for work each day...well, we'd have dealt with it, because what else can you do?  But even with him home, it's very, very hard.  After missing a night's sleep, even with the two of us trading off, you aren't yourself.  It's hard to explain unless you've had a period of being chronically sleep-deprived.  It feels like you aren't fully alive.  It feels like everything is happening in a daze, a mist.  You can't do anything that requires thought or effort.  It's like your mind tries to half sleep even when you are awake.

Janey started summer school this week.  I don't know if she slept at school today. We have always sent her to school even when she doesn't sleep, as unlike Tony or me, she seems little affected the day after not sleeping.  Even after the day after becomes the night after, she just doesn't seem sleepy.  She often stays up quite late the night after not sleeping at all.

We plan on talking to Janey's psychiatrist soon about this not sleeping.  Right now, we do give her melatonin, as we have for years, for all the good it does.  When I take melatonin, which I do now and then, I fall asleep always in about half an hour.  I don't know if it does a thing for Janey any more.  Her pediatrician has told us it's okay to give her Benadryl on the very worst insomnia nights, but that also now seems to have no effect.  If I ever take Benedryl, I'm knocked out like a light.  So I don't think any other sleep medicine is going to work.  The urge to be awake on the non-sleep nights is stronger than most anything.

It's gotten so we can tell ahead of time when Janey's not going to sleep a certain night.  The main giveaway seems to be her attention span getting extremely short.  On evenings before she sleeps, she changes YouTube videos or songs absolutely constantly, after about 10 seconds.  She watches the same pieces of video over and over and over, separated by little pieces of a different video.  She paces while she does this, and often does her OCD routines---straightening out the remotes on the living room table, turning on and off lights or the AC, doing spot checks to make sure we aren't crossing our legs or arms---the routines we've seen for many a year, but in a more intense way than usual.

The non-sleeping probably affects me almost out of proportion.  When I don't sleep, I feel hopeless and isolated.  It can feel, in the middle of a long, sleepless night, like we are on a little island or planet, completely alone.  It can feel like morning will never actually arrive.  It can seem like Janey will never sleep again, that this will go on forever and ever and ever.  I know my mind plays tricks on me when I don't sleep.  It can make my outlook pretty bleak.

And now it's close to midnight.  Janey is awake, watching a video she has watched many times tonight, one where a woman spells the names of animals after pronouncing their names in odd ways---KAN-grew for Kangaroo.  That, and the one where Mr. Harlow opens surprise eggs, and the three cats called Cutians, and Coco-Melon videos, all the videos on heavy repeat during sleepless nights---well, if I never hear any of them again, that would just be fine.  Let's hope for a few hours sleep tonight, and let's hope the summer someday becomes a sleepy fall.

With love to the school I didn't want

Today is Janey's last day of 8th grade, the last day at the school she's attended since the middle of 3rd grade.  And I am looking back with love on her years at a school I didn't want her to go to.

Janey and her classmates

Until late in 3rd grade, Janey went to an inclusion school.  It was the same school William and Freddy went to, and it was a special place.  Each classroom had a regular ed teacher as well as a special ed teacher.  Kids with all kinds of special needs were included, completely. I loved the school, and I loved the concept.  I loved everything about it, right up until they couldn't include Janey any more.

Janey getting her diploma!

The time of transition to the school Janey is attending her last day of today was very, very hard for us.  It was the time I found out that the phrase "crying yourself to sleep" can be literal.  I had pictured Janey at the inclusion school until she was 22.  I had been involved with the school for 13 years at that point, and I wanted it to be 13 more.  But I know now that it was the right decision to move her.  Inclusion is wonderful, but it doesn't work for all kids.  At the time Janey was moved, she was often screaming all day, lashing out, pulling hair, biting.  She had the love and support of her classmates and teachers, but she was far from happy, and she was (although I know you aren't supposed to worry about this, but I do) keeping the other kids from learning.  She wasn't included, because it wasn't safe to include her, and so an inclusion school for her was not at all inclusive.

So we moved her to her current school.  It was hard.  But from the very first day, we were made to feel welcome there.  It was a different feel of school.  It's a much bigger school, less family-feeling, but it was a place that accepted Janey, and embraced her.

Help when she needs it

Janey's early years at her new school were not smooth ones.  I've never, ever forget the call---the day her behavior was so extreme that she went right from school to the emergency room, and then to many days at a psychiatric facility.  But I'll also never forget the love and caring the school showed her at that time---how her teacher rode in the ambulance with me, how the ABA director drove the long drive to where Janey was placed to see her and talk to the staff, and most of all, how the school welcomed her back.  That is, I can see now, what scared me most.  Janey had already been once cast out for being simply too...autistic.  I was braced for it to happen again, for the school to say they simply couldn't handle her.  But they seemed surprised I would even ever think that.  They were committed to Janey.

Music bonded these two!

Over the years at Janey's school, we have had so many teachers that were simply amazing, in their dedication, skill and love.  Beyond that, the staff---the classroom paraprofessionals, the therapists, the program leaders, the principal---wow. They are all people who have chosen to work with autistic kids, and beyond that, people that very obviously love our kids, people that get them, people that see them as the coolest, most interesting kids around (which they are).

Another wonderful friend of Janey's

Love and a bond you can see

We went last week to Janey's moving up ceremony.  I can't even tell you how many different people made a point to talk to me about Janey, about the special routines they had with her, about her love of music, about what a kick they get out of her.  It struck me so much how they were talking to me about the same Janey I see---a cool, quirky, at times stubborn and challenging but unique young woman.

And so today, again I am crying a bit about Janey and her school.  This time, it's not about her being sent there, but about her leaving.  Thank you from the bottom of my heart to the Joseph Lee School for caring for and loving my Janey.

Freddy's college graduation, and why I'm not there

Today, my younger son Freddy graduates from Skidmore College with a degree in computer science.  It hasn't been the easiest road for him, and I am incredibly proud of him.  And I am also very, very frustrated, because I can't be with him.

Most days, I keep a positive attitude.  It's important to me to do so.  Janey means the world to me.  I love her more than I can possibly express. She has brought us so much joy.  That being said, there are times when the whole autism parenting life is so tough that I am overwhelmed completely.  Today is one of those days.

There is no-one who can care for Janey today, to make it possible for Tony, William and me together to be at Freddy's graduation and celebrate his success.  There is no respite---not on regular days and not on special days. There are several people who would have loved to be able to watch Janey, but that just were not up to the task, and honestly told me so.  I appreciate that.  The last thing I would ever want is someone caring for Janey that would be overwhelmed by doing so.  There are other people who would have been able to care for her but that live far away---I'm thinking of many of you!  But in reality, there is just not any respite.  Even today.

We thought about taking Janey and all going.  But a quick think-through of that killed that notion.  Janey would last about 5 minutes at most at the graduation. Then, one of us would have to take her outside, walk around with her. This would keep her happy maybe for 10 more minutes.  Then, she'd be upset, screaming.  The person watching her would, to say the very least, not be having a good time.  The family inside at graduation would not be able to concentrate and honor Freddy.  They would be thinking about how it was going with Janey.  Or, we could have gotten a hotel room for a few nights, to have a place to stay with Janey.  If that hadn't been extremely expensive (it's racing season in Saratoga Springs, and even a very cheap hotel, especially on graduation weekend, is insanely high priced), it still would have resulted in a long period of time in a room trying to keep Janey happy, and not seeing the graduation.  If one of us wasn't going to see the graduation anyway, it might as well be at home, with the resources we have here.  Tony missed Freddy's high school graduation.  At that time, Janey was in the hospital recovering with many complications from her burst appendix.  So---it was his turn to get to go to the graduation.

And I'm here, at home.  And Janey isn't happy.  She wants to go for a car ride.  I have taken her outside repeatedly to see there simply isn't a car here to ride in.  That doesn't matter.  If she wants a ride, there should be a car.  She is miserable.  There is no explaining to her that it's Freddy's day.  That is not something she understands.  She repeatedly says to me "Put on shoes!"  "Get jacket!"  "Get pocketbook!".  She tries in vain to get me to see that she needs her car ride.  And I am tired.

I've been sick for the last week.  It's a very slow recovery.  But like the car, that doesn't make a difference.  Janey doesn't get I'm sick.  I am exhausted.  And realizing, for the millionth time, how lucky it is that Tony is retired now.  We are broke, and we probably always will be from now on, but there really wasn't a choice.  Neither of us were going to last with him still working.  The years of little sleep and little down time added up.  It's incredible, still, that the two of us at times can sit down and watch a TV show alone, while Janey is at school or asleep.  And if this is life from now on, so be it.  But on days like this, it is hard to not reflect on the toll autism parenting has taken on our lives.  NOT that Janey has taken.  That autism in her particular form has taken.

I don't have solutions.  In thinking about writing this post, I wanted to close with ideas for making things better and easier for Janey and for all of us.  But I don't know how.  It would take an overhauling of our whole society, and at this point in time, that's beyond a pipe dream.

So, I asked myself, why write about this at all?  Why upset those who rightfully might feel that I should not explore the negative side, the negative feelings that this day has brought to me?

And I answered myself---well, why do I read memoirs?  Why do I avidly read about other lives?  For one of two reasons.  I read to hear about a life unlike my own, to better understand what it would be like to be someone else---someone affected by war, or by blindness, someone who grew up in a very different culture or family, someone living a life I'm not living.  I write to share our lives with others.  The second reason I read memoirs is to read about people living a life LIKE my own, to feel less alone.  That is the second reason I write here---because I know I'm not the only one living this life, and I want to be honest about my life to let them know they are not the only one.

All my love today to Freddy, my graduate.  I know you understand why I'm not there, but I hope you also know how much I wish I could be, and how much I love you, and William, and Janey.  Always.

Frederick David Amara, my dear son

The Easter Bunny Hunt---A Story In Pictures

The quest begins.

 Those of you who have read this blog much mostly know we don't give Janey chocolate, because when we do, especially after noon, she doesn't sleep.  At all.  Whether it makes sense or not, it happens, and it's why I don't discount anyone's food issues or theories.  It doesn't seem like just a little chocolate could have that big an effect, but still, it does.  However, we make one exception.  There is nothing on earth Janey likes more than a chocolate bunny.  She often asks for them at random times, like the middle of the night in the middle of the summer.  So, for Easter, she gets a bunny.  We usually get it on Easter day, not to have it around the house ahead of times for her to find and eat at the wrong time.

Empty Rite-Aid bunny rack!

We set out this morning to get her the bunny.  The first place we went was the Rite-Aid.  It's where we get prescriptions, so we are there a lot.  The pharmacist said a big hi to Janey, and she smiled at him.  But...no bunnies!  The Easter area was completely empty of any chocolate rabbits.

Picking out salami

So we moved on, to the grocery store.  Janey and Tony often shop there together.  We picked up a few other things we need before we looked for bunnies.  High on the list, as always, was salami, Janey's hands-down favorite food.  Janey picked out some with Tony in the main salami area, and then ran off to a nearby auxiliary salami area to get another kind she wanted.  After we'd loaded up on salami, we got a few other things, and saw a worker who is always so sweet to Janey, and told her Happy Easter.  She has a grandson with autism, and it's always fun to have her talk to us.

Auxiliary Salami Area

Finally, we went to look for bunnies at the grocery store, but again, no bunnies at all!  It was like there was some huge run on bunnies!   Janey saw some Easter cakes that looked interesting near the cashier, but we resisted them.

No bunnies at the grocery store either!

Some interesting cakes

Salami choosing

 We went to the quickest line, and missed going to the line of a cashier who is yet another Janey fan, but we waved to her, and Janey gave her a smile.  Out by the car, Janey picked which salami to first try. 

We continued our quest at the Walgreens, and there, finally, we hit pay dirt.  We found bunnies!  Janey picked out the one she wanted---not the biggest one, but a smaller sweet little guy.  The cashier there didn't know Janey, but was so sweet to her, talking while realizing she probably wasn't getting a response.  She asked Janey to give her a high five, and Janey did.

The whole quest made me happy.  In our little part of Boston, where Tony has lived all his life, where Janey has lived since birth, we feel included.  Janey is part of the community.  She is valued and treated with kindness and respect.  What more could we ask?  Happy Easter to all of you who celebrate it, Happy Passover to those who celebrate it, and Happy Day to everyone!

Finally, bunnies!

Bunny time!

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.

Manic no sleep night

I hope you'll forgive me if any of this blog post doesn't make sense.  I'm operating on very little sleep.

Janey had one of her no-sleep nights last night.  These seem to be happening every month or two, but no matter how often they happen, they are impossible to get used to.

We're starting to be able to see the sleepless nights coming, though.  Yesterday afternoon and evening, Janey was very, very happy and excited.  I put a picture on the Facebook companion page to this blog, showing her huge smile as we left for a car ride. I'm including here three other pictures I took of her.  They all show the look, the look that foreshadows a very long night.   When bedtime came, and her usual bedtime is 7 to 7:30 (her choice, we wouldn't make her go to bed that early, but she gets up early and usually likes a lot of sleep), she was still hyped up.  She got on the bed, watching videos on her iPad as she usually does going to sleep.  But she didn't sleep.

Watching her on nights like last night, there are signs.  Every movement of her body is exaggerated and somehow stiff.  When she moves around, it's with big, wound up moves.  Her eyes get an excited look we don't see other times.  And she has an attention scan at these times of about 10 seconds.  She switches videos on YouTube at a pace that seems impossible.  As I listened last night, it almost seemed like she was using the videos as sound clips in some kind of rap song, switching back and forth and always stopping the audio of each clip at the exact same place to move to the next one, over and over and over.

The hours passed.  We took turns laying down with her, and then both did.  When we got up, she got up, running around the house and asking for things---rides, showers, walks, food, videos.  She'd go back to the bed when we asked, but would get back up in seconds.  If we stayed with her, she'd stay on the bed, but in the hyped state.

At times like this, she constantly re-arranges things around her.  One of the things she tries to re-arrange is my arms.  Somehow, she doesn't want to see my arms when she looks at me.  Her preference would be to have them behind my back, where they are out of sight.  Time after time, she moves them back to where she wants them. 

Around one in the morning, she got a foot cramp, and frantically said "Does your foot hurt?  Does your foot hurt?"  I could see her foot cramped up, and told her to stand up on it to help it.  She did, and jumped up and down for about 3 minutes straight.  I got her back into bed.  She started asking over and over "Angelina?"  Earlier in the night, I had typed Angelina into her YouTube Kids search area, and when some pre-populated choices came up, I had her pick "Angelina Ballerina"  She wanted to do that again.  I did it a few times, but a few times was never going to be enough.  I know I could have done that hundreds of times and she'd have still wanted more, as part of a routine that would include the quick switching of vidoes in-between.

At two, I was no longer able to keep my eyes open, and Tony took over.  She didn't sleep, of course.  She got on the bus happily at 6:30.  She is at school now.

These nights are awful, and we have no idea what causes them.  It's possible she got her hands on some chocolate at school, it being the Easter season.  But it could just be one of her periodic manic times.

We give her melatonin, most every night.  It works well, except when it doesn't work at all.  When she got the foot cramp, we gave her some Motrin, in case she was in pain she couldn't tell us about.  I don't know if it had any effect.  I am pretty sure nothing we could do or say or give her would make a bit of difference on manic nights.  Her own internal demons or angels or hormones or whatever are far stronger than anything external, at times like these.

During the day, when we've slept, we, and I mean the larger "we" of other families living this life, can be the kind of parents that match up with the books, blogs, advice, standards, of autism parenting.  At night, when we would do almost anything to just be able to sleep, we can't.  And that is where I don't think anyone who hasn't spent a night like our last night can really, truly, deeply get this life.  It's the initiation into our club.  It's the shared tribal ceremony.  It's the bonding experience that by its very nature gets experienced away from the others it's bonding us with.  I try to keep in mind, during those endless nights, the rest of you out there.

Please, Janey, sleep tonight.

Autism Non-Awareness, Human Acceptance

Today is World Autism Awareness/Acceptance Day.

Last night, as I spent time with Janey as she went to sleep, I thought about this day a lot.  I thought about it, as people most often think about things, from a very personal viewpoint---that of Janey, and how best to help her through the world.  And I realized, in a lot of ways, helping Janey be accepted, in a full way, involves something that is the opposite of autism awareness.

Taking a step back, I'm thinking of my own view of politics, or really, the larger world.  For the most part, I completely ignore politics.  When I don't, I become easily overwhelmed.  There are so many aspects to it, so many personalities and philosophies and emotions and ideas.  And I can affect all of it very, very little.  I vote, and then I probably actually bury my head in the sand.  I do so not out of apathy, but because I know what I can do and I can't do.  I can't change the world, not in my current life.  But I can do the best I can for my own family, and so I look inward.  I try my hardest to be the best mother I can, to have the best marriage I can.  I don't succeed, of course, but I try.

The wider world of autism is in many ways like politics.  It's a huge world, and a huge spectrum.  Sometimes I try to look at it all, and take it all in, and I am overwhelmed.  As I sometimes see little of my own life in political life, I sometimes see little of Janey's life in my views of the wider spectrum.

And sometimes, trying to think about autism as a whole keeps me from focusing on Janey.  I start to feel paralyzed, in writing here and in making decisions for her.  When I look at the media for views of autism, I see little that seems anything like Janey.  The spectrum is so wide that there is almost no intersection between lives like that of The Good Doctor or Temple Grandin and that of Janey.  And I say that not talking about high or low functioning.  I am talking about personality, strengths, interests.  Janey is not part of a group.  She is herself.

What I have found, over the years, is that people who most accept Janey are people who most know Janey, as a person.  In a big way, that includes us, her close family.  I don't look at Janey thinking about autism, 99% of the time.  I look at Janey as my daughter.  Like every other person on earth, she is a mixture of many things.  At times, she is a delight beyond imagining.  At times, she drives me out of my mind.  I can say exactly the same things about her brothers.  Her autism doesn't make her who she is, any more than Freddy's asthma did or William's premature birth did.  It has affected her life, sure, very much so, but it's not the essential Janey-ness of her.

I've had on occasion over the years a telling reaction from people meeting Janey for the first time that knew ahead of time she was autistic.  It's a surprised reaction, followed by them saying "But she's so beautiful!" or "But she is so happy!".  Or, a few times, "But she's, well....(and here they don't use the forbidden terms but say in their own way that she's intellectually disabled)"  These people were, before meeting Janey, what they considered aware of autism.  They had awareness that led them to believe Janey would somehow look different than the norm.  They are surprised when they see a lovely, happy girl.  Then they are surprised she doesn't talk like a doctor or a PhD, that she isn't quoting train statistics or holding court on some focused high level math concepts.  Autism awareness has failed them.

To accept Janey fully, to accept all of our girls fully, and in fact everyone fully, we need to see them with non-pre-aware eyes.  We need to see them as they are.  Janey isn't an example of anything.  Janey is a person.  Like everyone, she has some special needs, in the most literal sense of that word, and her particular special needs are ones that society doesn't readily provide, so we need to help her more than we would others.  But if we look at her with fresh eyes, those not pre-filtered with autism awareness, we see her---a 14 year old girl, one who loves music, loves car rides, loves dancing, loves running around in fresh air.  One who doesn't communicate verbally very effectively, one who needs help with many life skills, one for whom academic skills are at a very low level.  One who delights those around her with her enthusiasm for life, one who is the most adventurous eater I know, one who last night hugged me tight and said "Love you!"

Without the filter of "awareness", without the filter of autism, Happy Acceptance Day!