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Sunday, August 25, 2019

Janey at 15

It's hard to believe Janey is 15.  Some ages seem like a jump to me of more than a year, and 15 is one of those.  It seems a lot older than 14.  14 still seems like part of childhood.  15 feels like definitely teenager-hood, and not that far from adulthood.  It doesn't seem possible.

So, who is Janey at 15?  By 15, I think you are who you are going to be, to a huge extent.  I can remember myself vividly at that age. It's the first age that feels like part of now, like years have gone by but in some basic way, I haven't aged beyond the person I was then.  I don't mean I haven't had a lot of life experiences, or learned a lot along the way, but my personality then is my personality now, to a large extent. 

When thinking about who Janey is, I both try and don't try to separate out the autism.  I can't and don't want to totally separate it.  It's a big part of who she is, and an important part.  But it's not ALL of who she is.  There is a lot of her that I am quite sure would be her no matter what.

Janey is a cool person.  She has strong likes and dislikes.  She likes music, but not just any music.  She loves British Invasion 60s music more than anything else.  She also likes most songs with a very strong beat---disco, some country, some dance type music.  She is not a fan of soft rock or slow songs or most of the country I like.  She likes some Broadway music, but not most.

She loves food, most of all what her father makes her.  They share a deep love for steamed vegetables (something I would not eat on a bet) and for eggplant and Chinese food and cherry tomatoes and raw onions.  She is the world's hugest salami fan.  She's a food snob.  Rarely does a bite of school lunches pass her lips.  Food needs to be fresh or freshly prepared or expensive!

Janey has gotten more into movies lately, particularly just a few movies.  She watches "Coco" and "The Emperor's New Groove" every day, broken up now and then by "Pocahontas" and "Home".  We are glad that a stage she had for a while of watching kids' YouTube videos and rapidly switching from one to another seems to have subsided, but it could come back.  Her favorite kids' TV show right now is "The Cat in the Hat Knows a Lot about That"

Car rides are still one of Janey's favorite things.  If she had her way, we'd spend most of our days driving about on a car ride.  She seems to love more than anything watching the world go by as she listens to music in the car.

Janey has a temper.  When she's told no about something she wants to do, she is extremely quick to anger, to scream.  More than she used to, though, she does get over it.  That doesn't mean she doesn't ask again, a few minutes later, and scream again if the answer is still no.

A sense of humor is one of the best things about Janey.  She loves to laugh with and at us.  She is so happy when we are all happy.  She rewards funny little songs and sayings with a huge smile and hug.

Sometimes I make myself step back and look at Janey from the perspective of an outsider, someone who doesn't yet know her well.  To that person, how would she look?  Well, most people do see her and know that she is not completely typical.  She does some things that look typically autistic, like flapping her arms.  Her speech is not generally in full sentences, unless she is scripting or using echolalia.  It's mostly requests..."Want a car ride?  Want salami?  Want cuddle?"  It's extremely rare she simply comments or states things.  She still bites her arm quite a bit, when angry or upset but also when very happy---it's a sign of strong emotions.  We hold her hand most of the time in public, not because she's a runner but because she is unpredictable.  She can sometimes poke people's stomachs or grab things that are dirty or unwise to grab or decide to take food out of someone's hand she feels should be hers.

Janey has grown up a lot over the years.  We can talk her down from more of her emotional crises, we can understand more of what she needs and wants, we can give her the tools to entertain herself, we can tell her to wait a few minutes (some of the time), we can even get her help with things like bringing us a needed item. 

If you had seen Janey at five or ten, you would probably be surprised at Janey now.  It is why I hope that those with girls like Janey who are younger than her keep up the faith.  My dear friend Michelle told me it would get easier, and she was right.  It did.  Either that, or we changed. 

I don't picture a "typical" Janey much.  A typical Janey would not be Janey.  It would be someone else.  I don't want Janey to be someone else.

But in saying that, I still feel fear.  I fear the world is not ready for Janey and her sisters and brothers in autism to become adults, to live in the wider world.  It's part of why I want the world to know Janey, to know her as a person, to understand that she exists and is as worthy of a life as anyone.  I worry, in my darkest moments, that the world will not embrace Janey, that the worst parts of the world will take advantage of her.  That is what keeps me up nights.  I want everyone to know the true Janey---not just the easy to talk about parts, but what she really needs to be a healthy, included person in the world.  It is why I talk for her.  I feel like I have to let the world know she is part of humankind, just as she is.  Not a sanitized version of her, not a technicolored dream version of her, not a doom and gloom and how tough a lot we have been dealt view of her, but the most accurate view of her possible.

Janey will start high school in 11 days.  I am scared.  I am scared about a long bus ride she will have to take to go to the great program we chose.  I am not scared of the time she's actually in classes, because the Boston schools have been very good to Janey.  I'm scared of the meanness that does exist in this world, of any moment in Janey's life when she is not being carefully watched, of her inability to tell us about her days, of her beauty and her innocence.  I love her so much.

Janey, thank you for being you.  We have been lucky to have these 15 year with you.  I hope we have many, many more together.

Saturday, August 3, 2019

Summer Report

Roll out those lazy, hazy, crazy days of summer.  I guess.  I am not a summer person, as people who have read this blog probably know, but this summer hasn't been bad, as summers go.  There was the non-sleep period, which I will never, ever say is over, because I fear a jinx more than anything, but, well, it's better.  Janey has still been often getting up extremely early, but lately, she is into Netflix on her iPad, and watching longer movies, even ones she's never watched before, and it's allowing us to drowse a bit while she's awake.

The big difference this summer, of course, has been having Tony home.  It's wonderful.  I said just before the summer started that it was the first summer I haven't dreaded, and I was right not to.  Parenting Janey is really a two person job, and Tony and I are both more rested, even with the non-sleeping issues, than we were in past summers.  

Another very nice thing has been summer school.  Two years ago, I took Janey out of summer school in the middle.  She was miserably unhappy.  It was the only real time I'd ever seen her crying because she didn't want to get on the bus, and she would come home crying, and I was getting emails from the teacher a lot of the type that say "Do you have any ideas about keeping Janey happy?  Is there something different at home?" to which I always have an urge to reply something like "Oh, yeah, I forgot to mention that we moved because the old house exploded---it just slipped my mind!"  I'm just being sarcastic here, but I do tell teachers if something big is happening at home, and to be fair, I don't get that question often.  So we cut our losses that year, and I was gun-shy last year and decided to just keep Janey home from summer school.  But this year, I thought we'd give it a try again, and she's been VERY happy there.  Her (different than two summers ago) teacher seems great and he stays in touch about positive and less positive things, and he sent me a happy picture of her from Friday, which is something I very much love to get.

Janey is continuing to seem more like a teenager all the time.  Her most used phrase with me is "Want to go away?"  She says this any time I'm in her space, and her space is often much of the house.  I take it with a laugh, though.  It's cool to see her wanting space, and I want to give her as much as I can.  It makes me sad, a lot of times, how little true independence her life is going to have, and I feel like it's important to give her any agency I can about how she spends her time.  It can sometimes get a little severe, though, like when her brother Freddy came home from work and said hi to her, and she replied "NO! Want to go away?" and pushed him.  But I remind myself her vocabulary is limited, and she's getting her point across.

One interesting development is how Janey has been using the TouchChat AAC app on her iPad.  I started with it a couple years ago with great hopes.  Janey has never really used it to talk, though.  She likes it, and she says, many hundreds of times "I don't want to listen to CD" which might sound like it's saying something, but it's what you get if you hit the exact middle of each screen in a row.  I think she likes the way it makes a sentence, and she doesn't ever listen to CDs anyway.  But for a while, when Janey is very upset, I have been pulling up the feelings screen on the app and asking her to tell me how she's feeling.  She usually picks happy first, even when she's very obviously not happy, but then she picks something else, sad or frustrated or angry or tired.  And she calms down.  Like a miracle sometimes, she calms down.  It's like being able to label the feeling helps tremendously.  Today, for the first time ever, when she was upset, she went to the iPad and went to that screen herself, and 
calmed herself down.  I was very, very happy.  I wish she'd use the app more, though.  I use it often around her, and she easily remembers how to get to various screens, and it's always available for her, but she has made plain that's as far as she wants to go with it for now.  And if I pushed her more, I'm 
quite sure she wouldn't be as eager to use it in the limited way she does as she is now---that's my Janey.

Of course, what comes next is high school, and I am nervous day and night about that.  I feel confident we picked the right program for Janey, and I am very happy she can go where we wanted her to go.  But's a new school, and it's a LONG bus ride.  It's on the opposite side of Boston, and if you know Boston traffic, you know it might well take an hour for her to get to school and an hour to get home, on tougher days, and some days, probably more than that.  She loves the bus and she loves rides, or we wouldn't even consider that, but I worry about her needing to use the bathroom while she's on the bus, I worry how she will react if the traffic completely stops the bus for long periods, I worry about other kids on the bus...I worry about everything.  I keep telling myself to wait and see how things go before all the worrying, but that's not my way of doing things, usually.

I was helped more than you know during Janey's no sleep nights by posting on the Facebook companion page to this blog, and reaching out to the other mothers in no sleep land, the ones, as Claire so incredibly well put it, awake at silly o'clock, as those hours in the middle of the night should be officially named.  Thank you, as always, for getting it, all of you wonderful people.  I hope you are having summers that are better than you'd worried they might be!

Thursday, July 11, 2019

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.

Monday, June 17, 2019

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.

Saturday, May 18, 2019

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

Sunday, April 21, 2019

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. 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!

Wednesday, April 17, 2019

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.

Thursday, April 11, 2019

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.

Tuesday, April 2, 2019

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!

Sunday, March 24, 2019

A dream of a race

The other night, I had a dream about a race.  In the dream, as often in my dreams, I was a very good runner (in real life, I simply can't run at all).  The race was being held in a Nordic kind of place, on a snowy road.  I was near the lead when we came to a very steep hill.  I told myself I'd get up it fine if I kept my eyes closed, so I didn't notice I was on a hill.  That strategy was going well, but for some reason I opened my eyes, and I couldn't go on.  So I turned around and ran the opposite direction.  I felt unsure about this, wondering just what the procedure was for running a race backwards.  I stayed close to the edge of the road, as to not get in the way of the runners going the right direction.  The dream ended after I got back down the hill, still running.

I'm a heavy dreamer, with almost every night featuring dreams, usually even more complicated than this race one.  But the race has lingered in my mind, and I'm starting to see it as an analogy of my life with Janey.  Not that I think my mind was thinking up analogies in the night, although who knows?

The running with my eyes closed part, to keep from realizing what a steep hill I was on...well, I do that a lot, figuratively.  One way is by not being around typical kids Janey's age much.  Of course, I know that most 14 year olds can talk well, read well, are fully toilet trained, are starting on the path to adulthood.  But by just not thinking about that, I can keep from comparing Janey, and comparing is one of the few things I can say very strongly not to do.  I keep my eyes closed in other ways too. In a way, I also don't compare my life to other 53 year olds like myself.  Maybe of them are starting to see the light at the end of the tunnel of childrearing.  They are seeing grandchildren, going on trips, looking toward retirement perhaps.  They are able to do such things as eat out for dinner.  They can attend college graduations without needing to worry about childcare.  They are at a different stage of adulthood than I am.  But if I don't think about that, don't compare, my life seems, well, just my life.

When I do open my eyes, at times a despair washes over me.  I feel, like in the dream, that I can't go on like this.  I am overwhelmed.  So mostly, I just don't think about the parts of my life which have so much left the mainstream.

Then---racing backwards.  Being on an opposite path, running the same race but in the other direction.

Life with Janey, as it races on, is often like an opposite race.  We aren't preparing her for college.  We aren't thinking ahead to her life on her own.  We are preparing to care for her for always, and if we look to the end of the race, it's a scary thing.  There is not much of a set path for an opposite race.  Sometimes it does feel like we are on the edges, staying out of the way of the regular racers, the ones heading steadily to the goal.

But in the dream, I recall seeing how lovely the snowy path was, even as I ran it in the opposite direction of the other runners.  That, too, is true.  I've followed the news of celebrity college cheating with a bit of a feeling close to snugness.  I don't have to worry about that.  I read about parents struggling with homework.  Janey doesn't have homework.  I hear about the pain of breakups, the worry about girls out on their own, the body image issues...and I can feel truly glad those aren't part of my life.  Not glad for Janey, missing the highs that go along with those lows, but glad purely selfishly for me, for the more intensive but vastly different parenting she requires.

I often like to search for an image to go with my posts.  I tried and tried to find a picture that looked like the hill in my dream.  I wish you could record dreams---maybe someday soon!  But until then, I'll include a picture of Janey I took this morning.  I guess dreams are like lives.  You never can quite see what another person's dream is like.  You can never quite live another person's life.  We can just live our own, and do our best with the particular path we are following.

Thursday, March 7, 2019

As a tribute to Mad Magazine, Snappy Answers to Stupid (or at least uninformed) Questions!

"Does she go to school?"

This one can still surprise me a lot, especially if it's asked by anyone under 70 or so.  Of course she goes to school.  Since 1975, all children go to school.  Are there still people who think that kids like Janey just have to stay home?

"But she'll live independently someday, won't she?"

Well, no.  She won't.  Unless something very, very unexpected happens between now and adulthood, Janey will never live independently.  And honestly, that's not something I dwell on or get upset about much.  She'll live with us.   She is not going to have the skills to safely live on her own, not at all. It's not a goal of ours.

"Did you take Janey with you on your vacation/weekend getaway/day trip?"

Yes.  Yes, we did.  Unless we do things within the hours Janey is at school, she is always with us.  I get this one more than I'd ever think I would.  There isn't anyone that watches Janey except our family and school.  No-one.  And that doesn't suddenly change because we want to go on vacation.  There isn't some backup corps of people that aren't usually there but will jump in if we are going away.

"But you must get a lot of help/services/respite/money because of her disability?"

No.  We don't.  I am not exactly sure where people get this idea.  Maybe in the past, there was more money out there, or maybe they are thinking of very specific cases, but basically, there is nothing now.  Someday, when Janey is an adult, she might get Social Security.  Some younger kids, if their famlies want it, get a lot of ABA therapy.  But there is no money for respite.  We do have a state Medicare type backup insurance for Janey, that supplements our regular insurance.  Once, for some reason, the state gave us $500, randomly, and we used it to buy Janey's first iPad.  But other than that, outside of school, no.

"She isn't, you know, SLOW?  Kids with autism are very smart, right?"

That's a tricky one.  I do think Janey is very smart, in some ways.  But in traditional ways, or in the ways of autistic people you sometimes see on TV, who are quirky but brilliant, no, she isn't.  She doesn't read, or write, or speak in complete sentences.  She doesn't have special skills, a savant type hidden ability.  She isn't going to college.  She isn't going to get a high school diploma. And that's no big deal.  She's herself.

"Have you tried (fill in the blank here with things like special diets or specific therapies)?"

 The answer is one of two things---yes, we've tried it and it didn't work, or no, we haven't tried it, and we aren't interested in trying it.  You are not going to ask that and get someone saying "Gee, we've never tried that, but now that you mention it, we will!"

"What a tragedy for you!  How do you go on? How do you live with a burden like that?"

The few times I've heard this, my breath was almost taken away with anger.  Janey is not a tragedy. She is our child.  A tragedy is losing a child, having a child die.  I know a few families who  have lost a child, and I can't even think about it without crying every time.  We have Janey.  No child's life is a tragedy.  No child is a burden.  I'm not minimizing how difficult raising a child can be, any child. But there is a difference between something being difficult and something being a tragedy or a burden.

"How do you do it?  I could never do what you do!"

Don't say this.  Don't say it like it's a compliment to us.  Don't say it at all.  You COULD do it.  You WOULD do it, if Janey was your child. You would do it to the very best of your abilities.  Saying that  you couldn't is saying we as parents are somehow specially chosen.  We aren't.  And while we are doing the best we can, making us seem like some kind of superheroes serves to give society a cop-out. Why give help, respite, services to super-parents?  They are amazing!  They are doing something other people couldn't do.  We will admire them, praise them, but we don't need to HELP parents like that!

And here's a few questions I'd like to be asked more often...

"What is Janey like?  Tell me about her!"
"What can I do to help you?"
"What services would be most helpful for the city/state/country to provide?"
"Want some coffee while we laugh about everything and anything, including but not exclusively life with a child with autism?"

Wednesday, February 27, 2019

More talking, less sleeping

Last week was winter vacation week here in Boston, the most dreaded vacation of all, at least for our family.  It comes a time of year when there is nothing you can do outside, when the weather is dreary, when Facebook is full of posts from people going away for vacation and if you are not one of those people, and you are dealing with a teenage autistic girl who doesn't care for a change in's no vacation.

An odd thing we have noticed over the years is that by the end of most any vacation week, when Janey is home with us completely, she talks more. I don't know why this is.  I know she's exposed to more language at school than at home, and she gets a lot of one on one attention there.  But maybe it's having two or more adults around her at all times, trying to keep her happy, or maybe she relaxes away from school like we all do a little, or who knows what.  But this vacation was no exception.

Over the course of a few days toward the end of vacation week, Janey said all kinds of things that surprised and delighted us.  One example---she was looking at my collection of postcards on the fridge.  I pointed to one she was looking at and said "What's on that one?" and she correctly said "a fox".  I then pointed to a cat and a horse, which she also named.  I stopped, as to not quiz her for too long, but she kept going, pointing to another and saying "That is a bear!" (correctly) and then to one with two cats, saying "Those are some cats!"  Perfect grammar, and spontaneous talking!

Later that day, her brother Freddy called.  Usually a perfect way to have Janey be totally silent is to have someone on the other end of the phone that would like to hear her talk.  But this time, she was actually answering Freddy's questions!  She recited her address and phone number, she responded to him singing a song she likes, and then, when I asked her "Do you know where Freddy is?" she said "Freddy is at college!"  Freddy and I were both taken aback.  We've told her that, many many times, but I think that's the first time she's ever said it.  It made me really happy, partly because I always worry that she just thinks her brothers sometimes disappear into no-where.  It was good knowing she knows where he is.

The next day, William called.  Janey wasn't quite as chatty that day, but late in the call, just for fun, I said "Where is William right now? and Janey said, right away, "William is in Chicago!"  We were on Facetime, and I tell you, William's face reflected my own in showing huge shock at that answer.  I KNOW she's never said Chicago before, and I truly didn't think she had any idea where William was.  We were all so happy.

In the middle of those two days of talking, there was, as there always is, a night. I think I'm starting to be able to sense as soon as bedtime comes on nights like that one that something is up.  Janey was just not tired.  We followed our bedtime routine, but she kept jumping up, asking for things, turning on the TV, getting food from the fridge...long past her usual bedtime of 7 or so.  At 10, she was still awake.  At midnight, she was still awake.  At 4 in the morning, she was still awake.  You get the picture.  She slept not a wink all night.

You would think that she'd be tired the next day.  But she wasn't.  She was peppy and lively and wide awake all day.  I figured at least she'd go to sleep early, or at the very least at her regular time.  But no.  She finally went to bed that next night at 9 pm.  She had woken the day before at 6 am.  So she was up for 39 hours straight.

I've written before how Janey once in a while just skips a night's sleep like that.  I think this time was the record time awake, but it's not that uncommon that she's cheery the day after a night without sleep.  It's like her body and mind simply don't need sleep some (thankfully fairly rare) nights.  However, Tony and I do.  We spelled each other, but still, people in their mid-50s don't function with that kind of fractured sleep too well.

I do think there's a connection between the increased talking and the lack of sleep.  Janey's brain is a fascinating thing.  It seems like it sometimes goes into overdrive, into a mode where all the knowledge she has stored is far more accessible than usual.  I can see why you wouldn't want to sleep, if that didn't happen to you that often.  You'd want to stay awake, and maybe your mind would keep you awake.

Sometimes it seems like a huge part of Janey's autism is a brain that shifts between levels of alertness, levels of operating speed and ease, more drastically than most brains.  Any report ever written about Janey mentions that what she can do depends very much on the day.  Some days, she is barely responsive.  Other days, she is so engaged that it's startling.

If Janey ever got to the point where we could both sleep while she's awake...well, that would be great.  I don't think the occasional sleepless nights are going away, and I accept that.  But boy, I don't think even a week later now, Tony and I are much recovered.  Now for some more coffee...

Monday, February 11, 2019

I hate old videos

We are not big video-making people.  We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.

We did a fair amount the year Janey was two.  Or I remember us doing a fair amount, and I've seen them around.  But I don't watch them.  I watched a bit of one, once.  I started to scream, watching it, and begged Tony to turn it off, which he did.  It was Janey, pre-regression.  She was talking.  Talking as well as any two year old talks, better than some.  There were slight oddities to her talking, but it was talking, fluid talking.  Her eyes were engaged, she was lively and cheerful.  She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!"  Not echolalia.  Regular, creative talking.

This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues.  At one point, he'd uploaded some videos of Janey onto it.  They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.

What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly.  It was in no way up to age level, and I think I'd convinced myself it was about like it is now.  The video showed me I was wrong about that.

The video starts with Tony filming our cats (we had more then---four of them).  Then Janey walks in the room.  She is carrying a frozen pizza.  She says "Want some pizza?  Open it!  I want pizza!"  She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open"  I say "But what is the magic word if you want something?"  She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!"  Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?"  She says something I can't understand at first, but then says "I want a banana milkshake!"  I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.

It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor.  She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years.  She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.

I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot.  I know in my heart Janey's talking is decreasing over the years.  She talks less now than a year ago, much less than maybe 5 years ago.

She is not losing ground in other areas.  She understand more all the time, from what she can show us.  She is able to do more for herself.  She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends)  But she is more affected outwardly by her autism than she used to be---I have to admit that.  And it's okay.  It's truly okay.

The latest thing that parents who blog about autism often seem to be called is "martyr parents".  That hurts.  I don't ever, ever, ever want to seem like a martyr.  And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul.  It is my great privilege to be Janey's mother.  I love her more than I can possibly state.  But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer.  I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.

Should I make myself watch old videos, to force myself to see what I don't want to see?  What good does it do?  I don't think that anything I can do, or the schools can do, changes Janey much.  Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy.  That is less than it was  in the past, for the most part.  But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less.  There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases.  There was "want to go for a car ride?", "want to snuggle on Mama's bed?"  "want a TV show?", "want a shower?" and "want shoes on?"  She did not answer any questions.  She did not label anything, or comment on anything, or say anything we haven't already heard many times.  This weekend was pretty typical.

I hate old videos.  I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained.  I think I'll wait another decade or so before watching old videos again.

Friday, February 1, 2019

A long ago worry resurfaces

For the last year or so, every now and then, about once a month, Janey does a very odd thing with her eyes.  Basically, she rolls them up so high you can only see the whites of them.  This seems to happen more often at night and outside, when she's a bit tired.  It's a very alarming and scary looking thing, but most of the time, she seems fairly unbothered by it.  Once in a while, she does get upset.  One time it happened in the daytime, and she was trying to walk around, but couldn't seem to see as her eyes were turned up.  I sat her down and covered her eyes for a bit until she got control of them back.  We have tried to catch this eye thing on video, but haven't managed to so far, partly because it's often dark when it happens.

Janey had her IEP meeting on Tuesday, another very nice meeting, her last one in junior high.  She will be at a new school next year, high school someplace, and it's hard to say goodbye to the great team she has where she is.  I almost forgot in the midst of the meeting to ask if anyone at school had seen the eye behavior, but did finally remember.  Her classroom teacher (one of my favorite people ever, by the way) had seen it a few times.  

Later that day, I got a call from the school.  Janey's leg was jerking back and forth, and she didn't seem to be able to stop for a while.  It had happened twice that day.  I spoke to her teacher and also the school nurse, and both said they didn't think it was a seizure (which of course is our biggest worry).  She recovered from the jerking and was cheerful and wide awake.  Everything I've learned about seizures has said that after one, just about universally, the child is very, very tired and goes to sleep.  This hasn't happened with Janey, with the eye thing or with the leg jerking.  However, by chance, Janey's annual physical was the next day, so we agreed with the nurse to bring it up.

At Janey's physical, we explained about the eye events and leg jerking.  Her terrific pediatrician asked us some questions, and agreed it didn't really sound like seizures, but did feel she should see a neurologist.  She gave us a referral and said we should see one within a month.  As often happens, when I made the call at home, there were no appointments available until about 2 months, at the start of April.  I put in a call to see if this was okay, and haven't heard, so we will go with the April appointment for now.

When I was talking to the pediatrician, I brought up something from very, very long ago, when Janey was about 19 months old.  She wasn't walking then.  She was just barely sitting up, so obviously her physical development was very, very delayed.  We were referred to a neurologist then, and saw one, not at a hospital but at our health plan's office.  It's hard to remember the details of that visit, but she ordered an MRI, which we got.  And then I didn't hear, and didn't hear, and finally called over and over and FINALLY got a call from the neurologist.  

I remember getting that call fairly vividly, although I think I've tried not to think about it over the years.  The house was very noisy when it came in, with 3 kids doing their various things, so I went outside to hopefully be able to hear better.  We live near trains, so of course a train was going by.  And the neurologist had a very, very heavy Russian accent.  I could barely understand her under the best of conditions.  But from what I could hear, she said that the MRI wasn't normal.  She said something about there being gray matter where white matter was supposed to be, or vice versa.

It's hard to understand why it seems like there was never any followup on the finding.  I honestly can't even remember talking to Janey's pediatrician about it.  Her old pediatrician was, well, not great for Janey.  He had been very good for the boys, but by that time, he had risen in the ranks of the health plan and seemed to have little time.  He also just seemed to be overwhelmed by Janey's various needs.  I think what happened was Janey's physical development rapidly got better at that point, and as she headed into the year that she was two, her best year, we all kind of put the strange finding behind us.  Two was her golden year.  She walked, she talked a lot, she was even discharged from Early Intervention.  She was going to be fine.  And then, of course, around age three, the horrible regression happened.

But I did recall looking up what it meant to have gray matter in the wrong place, or white matter.  I found it was a condition called Gray Matter Heterotopia.  There wasn't much info then, and I think I didn't dig too hard.  However, I remembered something that had said that with girls with this disorder, often they start having seizures in their 2nd decade.  That seemed very far away.  Now, of course, we are in Janey's 2nd decade.  So I mentioned the long ago MRI to Janey's current pediatrician.  She looked up the long ago report, and read me a bit from it.  

The report said there was a good deal of gray matter where white matter should be, but not enough to make a definite diagnosis.  It also said there were changes to the frontal lobe, nonspecific changes.

Looking up Gray Matter Heterotopia now, there is still not a huge amount of information available.  Here's a Wikipedia article. LINK    It's hard to read, emotionally, what is out there. 

Janey has had another MRI since that first one, when she was 11, but that one was specifically looking for a possible tumor connected to an abnormal blood reading.  What I've read said that unless the MRI is specifically looking for the gray matter problem, it might not be noticed.

So---something I had put out of my mind long ago is now, of course, back in my mind.  One of the two medications Janey takes is an anti-seizure medication, prescribed in her case for help with bi-polar type symptoms.  But it could also be serving to mask seizures, her pediatrician mentioned.  Is Janey having seizures?  Is this the next thing?  I know seizures are fairly common in autism.  How does the gray matter issue figure in, if at all?  Is there something we should have been doing specifically for all these years that we weren't or aren't?  What is going on?

Amid a season of many worries, this one is hitting me fairly hard, I must admit.  Hopefully, we will get some answers soon, and we'll do the best we can with whatever we find out.  That's what we've been doing, and that is what we will keep on doing.  It's what all of us living this life do.

Monday, January 28, 2019

Assorted Janey Anecdotes

Sometimes the little stories and thoughts involving Janey that I have stored up don't come together into a whole that makes for a good blog entry.  That's been happening lately, so I thought I'd just put them together into an assortment of little tidbits!

#1.  The other day, we were visiting a friend of mine who is in the hospital.  As we waited by the elevator, a doctor walked by.  After he was out of sight, Janey said in a happy tone "A doctor!"  It was a kind of utterance I've rarely heard from her, just an observation, not a request.  I was surprised at that, and that she knew the man was a doctor based on the clues of his clothing and setting.

#2.  We went to the Savers thrift shop yesterday, my favorite shopping place.  While Tony looked around, I had Janey with me as I looked at sweaters.  She was excellent, as long as I kept up what I think of as my patter, a non-stop monologue on what I was doing, remarking on the clothes, asking for her opinions (which were not forthcoming) and generally just rambling.  A woman close to us kept looking at me in a way that seemed to say "Okay, that lady is kind of odd and I will just keep on eye on her" until I saw her looking at Janey and suddenly getting another look I'm very familiar with, the look that says "Oh, I see.  The daughter is not quite right"  I don't like that look at all, but I'm sure I've used it myself.  She followed it by a bright and fake toned "Oh, you are having fun looking at clothes with your mother, aren't you?"  I am not sure what I would have rather had her do.  I am being petty in my mind, but the whole thing bugged me.

#3.  Tomorrow is Janey's IEP meeting.  Since she is 14 now, she has the option of attending the meeting.  Her teacher is going to bring her to the end of it.  I am glad there is a push to include people of Janey's age and up in their own planning, but quite honestly, although it will be fun to have Janey there for a part of the meeting, I am not sure how much Janey will understand of what is happening.  It's one of those cases I run into a lot, where something is in theory the right thing to do but in practice often doesn't play out to help Janey.  But we'll see how it goes.

#4.  I put in the high school choice form.  We put first on the list the school I wrote about that I most liked.  You had to put at least 3 schools down.  I put 6, and listed last the school very close to our house.  I don't know if it was really my last choice, but I don't want it assigned to us just because it's close.  I hope Janey gets into our first choice.  I am telling myself I'm ready for a fight if she doesn't, but I hate a fight.  So I'm just going to keep hoping push doesn't come to shove.

#5.  The other day, it was very, very rainy and windy when it was time for Janey's bus to come home, and the bus tracker app showed that the bus had gone to the bus yard without dropping her off.  We were pretty sure they were really using a sub bus, and that she was fine, but she was about 15 minutes late coming home.  And Tony and I both were starting to feel panic, even though it was not a panic situation.  There is just something unspeakably scary about the thought of not knowing exactly where Janey is.

#6.  Janey loves to watch Tony play video pinball.  His favorite game is one called Funhouse, and the game often speaks the lines "Stop playing with the clock!  You are making me very unhappy!".  Janey's teacher emailed us last week that Janey kept saying those exact lines at school.  The teacher didn't know where they were from.  Tony was very, very happy to think of Janey quoting the game!

#7.  Tony was NOT very happy when Janey started singing along at the Savers to Billy Joel's "Piano Man"  He is not a Billy Joel fan.  I loved it, though.  The background music in stores is something Janey always notices. 

#8.  The pre-IEP reports from Janey's school said she will give her name and address and phone number most of the time when asked.  I know she can do this, but I've rarely heard it.  I was determined to, and kept asking Janey for her address, over and over.  She obviously didn't want to tell me, but I didn't give up for quite a while, until she got upset.  I don't know why I do this.  Partly I guess it's because she talks so little at home, less each year, I'd say.  I want to hear what she can say.  I am not satisfied just knowing she CAN say things.  I want to hear them myself.  I need to stop with that.

#9.  Janey's most common phrase at home is, as it has been for many years "Cuddle on Mama's bed?", meaning she wants Mama to cuddle on Janey's bed.  Cuddling isn't really cuddling, either.  It's laying next to each other as Janey stares into my eyes, looking at me as if I hold some secret she hopes she can figure out if she looks long enough.  She will do this, if I will stay still and let her, for hours. In the past, she usually got bored of me and went for her ipad after a minute or two, but now, she often doesn't.  It's almost always me who loses the staring contest, who gets restless.  I feel guilty about that.  I wish I knew what she was thinking, why the looking at each other is so important to her.  Eye contact certainly isn't an issue for her.

#10.  Life with Janey is absolutely calmer than it was in the past, especially during the tough years from 5 to about 11.  But sometimes, it also feels like there is less of Janey's personality showing through, that she is retreating into herself more, or at least making her needs less known.  As I said, she talks less, but also watches less TV, asks for less car rides, less food, less everything.  Sometimes I despair a bit over this, other times, I try to tell myself she is just a teenager, more self-contained than she was.  I think about this a lot.

#11.  I am glad there seems to be a growing awareness of the need to better understand those with severe autism, those who cannot always self-advocate, those who will not live alone or support themselves, but those who are just as deserving of a voice.  If we are not speaking out for our loved ones, if we are silenced in speaking for them, if we are made to feel that if we don't find a way to give them their own voice, we are not entitled to advocate for them...well, it's a complicated issue, with much caring and love for those with autism in all the differing ideas and voices, but I will keep forever doing both---working to give Janey her own voice while speaking out as best I can for her when she is not speaking for herself.