"Want to take a shower?" times infinity

Janey slept very little last night. Instead, she spend the night waking up Tony and me over and over and over and over, each time asking, in the exact same tone of voice, "Want to take a shower?"

 After all these years, we still have no idea how to best respond to repeated questions like this. You would think we'd have figured out a strategy that works. The fact we haven't makes me think there isn't one. 

 The rules about a shower are something we stay pretty consistent with. During the day, Janey can take a shower pretty much any time there is time. She sometimes takes 10 a day. The water bill is high, but there aren't that many things Janey loves to do, and we are happy to make her happy. However, during the night, we have a rule that showers have to wait until 5 am. We don't want to be turning off the shower (she can turn it on herself) and drying her off and helping her get re-dressed over and over, and we also of course want to encourage sleep over constant showering. So it's not that she thinks that we might give in and let her take a shower during the night. We just don't.

 So...how do we respond to the endless requests? At first, we just say something like "No, it's not 5 o'clock yet. No showers during the night". This makes little to no impression on Janey. She will ask again, after a minute or two, forever. After a while, when we have been driven to that point, we usually say something like "We'll answer you two more times. After that, we aren't going to answer you if you ask for a shower". We try that for a while. Again, it makes no difference, except sometimes then Janey starts crying from our lack of answering, and we feel guilty. We try other things. Distraction? We try. It's hard, during the night, when we are exhausted, but we try talking with her about something else, snuggling with her to try to get her to sleep, letting her watch videos, things like that. It doesn't work. She will keep asking, in the tone that sounds like a recording, all night.

 At some point, because unfortunately we are human, we might answer in a tone that allows in a little anger..."NO! No shower! We've told you that a hundred times! NO SHOWER!" That does no more good than anything else, except for making Janey cry almost for sure.

 We've tried other exotic things over the years---a recorded answer we play on our phone, a social story about showers being only for the daytime, a written answer on paper we show her. Nope. No dice. No difference.

 You might be thinking now---what if they just gave in and let her take the shower? Well, during the day, we do that sometimes, and once or twice, on long, long nights, we've tried that too. She's be happy for the length of the shower and maybe 5 minutes afterward. Then...you guessed it...again, "Want to take a shower?" The problem is, I think, that Janey has a hard time thinking of things she wants to do. She truly doesn't want to do that many things. She wants car rides, showers, taking the bus to school, eating and videos. During the night, she does sometimes ask for car rides, but she does seem to get that when it's dark, that's not going to happen. We try to keep middle of the night eating at a minimum, but we sometimes do leave food for her to eat around. She can always watch videos. The bus to school---she does ask for that, but she seems to get pretty much that's only once a day. But showers...I think she knows that she COULD take a shower, even if we aren't allowing it, and when she is awake and restless and bored, a shower seems like a good idea. And her understanding of time and her lack of understanding our annoyance, keep her asking over and over.

 I have no idea how to deal with this issue. And I am very aware that many people like Janey don't talk at all, and that even a repeated question would be something their loved ones would love to hear, and I try to keep that in mind. And I am glad Janey is expressing what she wants. But at 3 am, after being kept up all night, when the question gets asked again---well, that's tough.

 This sort of thing is why I worry about the thought of Janey ever being cared for at a group home or the like. We love Janey extremely much. How would someone react that, although they might care very much for Janey, they might be a professional with a huge amount of patience, how would that person that isn't her parent react to a repeated question that even for us, making us half deranged? The scares me.

This kind of issue, the kind of problem that seems without a solution, is one of the hardest parts of being Janey's parents.  There isn't a guidebook for this kind of things.  Janey's mind, her understanding of the world, her wants and needs, are just not typical, not the mainstream.  Solutions that would work for those with less severe autism, like rewards or reasoning or even punishments or tokens or social stories or so on...not something that Janey gets or is helped by.  

So...today we are tired.  We are frustrated.  We are glad it's daytime, for now, and we can give in and let Janey take a lot of showers and car rides.  We look forward to school tomorrow.  We go on, loving our Janey, managing as best we can.

Janey is...TWENTY???

 It's hard to believe, but it's true.  My sweet Janey is now 20 years old.  Her birthday was in August.  Even though obviously I knew it was coming, it still seemed and seems impossible.  

I admit, it's been a little bit tough in some ways to think of Janey as being 20.  I guess it's hard for any 

Janey on her 20th birthday

parent to ever believe they have an adult child, but of course with Janey it's a little different.  She is in many ways still like a toddler, and she always will be.  

A few weeks ago, I had the absolutely wonderful privilege of getting to meet in person my grand-niece, who I consider a granddaughter.  Olive is almost 3, and to say I fell in love with her is a severe understatement.  My three kids were all so amazing in their own ways, but everyone says that being a grandparent is a whole new level, and they are right.  Sitting and playing with her---Tony said he didn't think he'd ever seen me happier.  

I realized, after spending delightful time with Olive, that in some ways I've avoided being around children other than Janey much over the past many years.  I don't ever want to compare Janey to other kids, and I still don't.  But seeing how much Olive could talk, and how clued in she was to emotions, and people, and how quickly she could learn new things---it did highlight a little what Janey's limitations are.  Not that I didn't know them---I did.  But I saw that I had very much kept myself from thinking about them as much as I might have.  And maybe now I'm ready to.

Janey being 20, being absolutely an adult, in some ways makes it easier.  She is what she is.  In the past 3 or 4 years, I don't think she has changed much, or honestly, learned a great deal that is new.  Her interests change a little here and there, but the core Janey is the same.  Her talking used to come and go a lot more, but now, it's steady, and at a bit lower level than at a lot of points.  She makes requests, and that is mostly all.  There is less echolalia, and next to no just commenting.  I am very glad she can make requests, but boy, would it be something to get to hear her tell us what she is thinking, or what is bothering her when she cries, or why she is very excited the nights she stays up all night.  And I don't think we ever really will know those things.

As the years have progressed, sleep has emerged as the biggest challenge with Janey.  In the last few years, it's not just that she sometimes doesn't seem to need to sleep at all, it's that this cycles with periods where she sleeps a huge amount.  She'll go a few weeks sleeping up to sometimes 16 hours a day, and then have maybe a week of more typical sleep, and then go into a few weeks of very, very little sleep.  Nothing external seems to cause either one.  You might recall that in the past, we never gave Janey chocolate as that kept her awake, but that doesn't seem to happen any more, which is good, as Janey loves chocolate!

Today---Janey and a donut!

And when she sleeps so much, she doesn't seem sick or depressed---just sleepy.  The up all night times are tough, but not quite as tough as they used to be, as Janey seems to make less demands on us during the night.  The sleepy times make it hard to do things with her---she slept through huge parts of the days Olive and her parents were here.  

As Janey changes less, as she is settling into who she is as an adult, I feel like my worries and concerns, and sometimes my anger at the world, is changing more.  We worry, as do so many parents in the US, what will happen when Janey is 22 and no longer able to go to school.  Janey loves school, and this summer, at the start and the end when there was no school, she didn't do well at all.  We have registered her with the state and she has been determined eligible for services for the severely disabled, but from what we have heard, labor shortages are making it very hard to find a program for those turning 22.  And if we do find a program (a day program is what we want), can we trust it as we trust the schools?  I've read a few horror stories about abuse of disabled adults lately, and they make my blood run cold. 

I think the tides are turning a little when it comes to those with what is now called severe or profound autism.  I hope there is more awareness than there once was about people like Janey.  Even so, sometimes I feel fury at money being spent on so many other things and so little being spent to help people like Janey.  I truly feel a lot of it is that people like Janey don't have much of a voice---they are unlikely to vote, unable to self-advocate.  And the money that there is so often used for research or studies or support groups, not for direct care.  I admit I can feel a white hot fury at hearing about some million dollar research study about autism, or yet another support group.  I could go to a support group every day of the week, I could submit Janey's genes to any number of research studies, but if Tony and I want to have a night out, there is no program for that. 

I will do my very best to keep writing about Janey as long as I am able.  A big part of that is that I want to let people know there are people like her---ADULTS with severe autism.  To the others that have walked this path with me with their own girls (and boys), so many of who now are also hitting those adult years, and to those new to this journey---I want you to know you aren't alone, as you have helped me know I'm not alone.  

And to Janey, I will read this next part to you.  I don't know if you will understand it, but I hope you do.  I love you so much.  You are an amazing person, a person who deserves to have a meaningful, interesting, varied, happy life.  Thank you for being my daughter.  My adult daughter.  My amazing, beloved, beautiful, unique Janey.

Summertime Blues

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

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

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

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

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

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

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

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

Janey and the Eclipse

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

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

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

Very early start!

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

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

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

Janey and Tony during totality

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

Amazing

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

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

Janey enjoying the pre-eclipse

Autism Awareness Day---the adults with autism version

 I've had this blog since Janey was three and first diagnosed.  Now she is 19---hard to believe.  That's a lot of World Autism Awareness Days under our belts.  I was thinking today how my awareness wishes for the general public have changed since she became an adult.  

First of all, there's just that---she's an adult.  There seems to be thought out there that autism is something for children.  I am not sure what people think happens to those children with autism---upon turning 18, they are suddenly no longer autistic?  They just somehow disappear?  No---they are still around, still autistic, still in need of services and help.  

I remember thinking when Janey was getting close to an adult that I wanted to be sure to keep writing about her, to help in my small way to raise awareness of autistic adults.  But as you might have noticed, I write far less than I used to.  That is tied into something else I'd like to make people aware of.  As the years go by, there is less new news.  I might be negative and say there is less hope---but that's not really it.  There is less urgency, somehow, to DO something, to FIX something.  That is an awareness that doesn't need a special day for us to arrive at.  If there is something Janey isn't doing at this point, it's unlikely she will be doing it in the future.  And that's okay.  

My father asked me something the other day that made me think.  He said "You must sometimes have some sadness and regret over things that Janey will never do".  And I realized---I don't.  I don't think a lot about what Janey won't be able to do.  What comes into my head often is the phrase "That's not her path".  It's like how I don't regret that I can't fly, or that I'm not an astronaut, or a world class figure skater.  I was never going to be or do those things.  I don't regret what was not my path, and I don't really feel regret for Janey that she's not going to do things that were never her path---live on her own, get a job, get a high school diploma, go to college.  She has her own path.  That's something I'd like to make people aware of---that everyone has their own path, their own way through life, and we don't all need to have the same milestones along the way.

Lately, much of our life is bureaucracy, the endless series of obstacles to overcome and hoops to jump through to get Janey what she needs as an adult.  THERE'S something I wish people were more aware of---how hard it is to get even the smallest amount of help for people like Janey, except for school.  For example, we are working on registering her for services when she's 22.  She is 19 now, so it might seem early to start, but believe me---it's not.  First, we had to do an endless form and send in a huge amount of paperwork to prove there was a need for her to get adult services.  Then, we got requests to send even more---more reports, more proof of her autism, more IEPs, things like that.  THEN we got assigned a worker, and we took Janey to meet her.  The next day, I did many hours worth of phone interviews about Janey's development and current level of functioning.  You might think all that would be enough.  But of course not.  The worker told us we need a letter from her psychiatrist outlining all the reasons that Janey meets the definition of autism---despite her being diagnosed as such at least 3 times in the paperwork we already sent.  We are working on getting that letter, but getting no response from her psychiatrist at all.  Once we get that letter, if we ever do, finally she is formally put in to MAYBE get services---all this is just part of the application.  Once she is approved (and I would certainly hope she will get approved, but who knows?), we get assigned ANOTHER worker and we start trying to figure out if there are actually any programs out there for her (which it is very possible there won't be, from what I hear),

My boys both went to college, and got good financial aid, and I swear that was about 10 times easier to apply for than all this is.  You could spend 5 minutes with Janey and know she needs lifelong services.  Tony and I are fairly good at paperwork, and we are about out of our minds at this point.  What in the world would someone who might not read well or speak English well do to get this kind of help for their child?  WHY is it so hard?

And this is just ONE of the tasks of adulthood.  We also had to apply for Social Security for Janey, which wasn't quite as complicated but took over a year to be approved, and we had to get guardianship for her, which was another nightmare of complexity and is something we have to repeat EVERY YEAR.    I don't think it has to be this hard.  I think there's an impression out there, and in fact people have said to me that they think people with autism "get all kinds of help and services", like you get the diagnosis and suddenly help and money and respite and programs are all provided in abundance.  I'd like people to be aware that most certainly is not the case.

However, of everything I wish people could be aware of, the biggest is this---Janey is an amazing person.  She is our joy.  She loves so many things---good food, good music, good (in her eyes anyway) videos and movies.  She has a smile that is so wonderful it's impossible to describe if you haven't seen it.  She's funny and beautiful and in her own way, very smart.  You might look at the bare facts about her---a recorded IQ of 30, very little useful speech, not fully toilet trained, unable to read or write---and picture a tragedy.  The tragedy to me is that anyone would think that.  She is everything to us, and she deserves a full and interesting life as much as anyone does.  

I wish sometimes everyone who is responsible for any kind of public policy that affects the disabled could meet Janey.  And meet all the other amazing people out there that I've met because of Janey---I wish they could see for themselves the actual people they are making decisions for.  Maybe I'm a cockeyed optimist, but I think if they could, they would do all they could to make the world a place where Janey and all the others like her could not just survive, but thrive.

Catching Up

 So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on.  I didn't used to be that way---I'd write multiple entries a week, sometimes.  Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different.  Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up.

One big happening is that Tony got guardianship of Janey, officially.  I wrote about the endless seeming process we had go to through for this.  He finally had the day in court, and after hours waiting in the courtroom to be called (luckily we decided against bringing Janey to court with him, which wasn't required), the judge approved the guardianship without any real problem.  It does have to be renewed every year, because of the medication she takes, but she is assigned an attorney for this, and it shouldn't be as tough a process.  We were adviced just one parent should be the guardian, in most cases, so we picked Tony.  It doesn't make a big difference day to day, as Janey wasn't really apt to make a lot of decisions on her own, but for things like financial issues or health care issues, it just makes things more straightforward.

Another happening---Janey finally started getting social security.  It took over a year for her application to be processed, but she was approved, and gets a monthly payment now---not enough to live on, certainly, but it helps a lot.  We are getting retroactive payments back to her 18th birthday, too, in several installments.  We are using her money for the special food she asks for, and for clothes and pull-ups and so on.  This is the kind of social security for people who will not ever be able to work, and I'm very glad it exists, but if she didn't have a place to live and a family to care for her, it wouldn't go far at all.  But in our situation, it is helping quite a bit---the years since Tony retired have been tight ones financially to be sure.

We are currently in the middle of yet another endless process---what is called the 688 application.  It's the process for getting Janey services when she turns 22, in less than 3 years now.  It involves a referrel from the school, us sending in huge amounts of documents, then in this case, us getting back requests for even more documents, mostly it seems evaluations from all different phases of her childhood.  It's not enough to show she has severe autism---I guess we have to show she's had it all along, or that we didn't just somehow try to game the system by getting one diagnosis along the way and then just coasting along on that, reaping in all the exciting benefits it gave us....  I simply can't understand it can't be an easier handoff from school to adult services.  And from what I hear from other parents in Massachusetts, the services actually available once Janey turns 22 are very limited, even for those with severe needs.

This ties in a bit to one good development.  Janey has started an after school program.  She hasn't been in one for many years, since she was about 8.  This one is especially for people in what's called the transition program, the life skills program in the public schools for people 18-22.  It's 4 days a week, and there is transportation home (without that, we wouldn't have been able to do it, as in the evenings a drive to her school could take up to 2 hours in Boston traffic each way)  On the days Janey goes to after school, she gets home as late as 7pm---that is after leaving the house at 6am!  It took us a bit to decide whether or not we wanted to send her, but what it really came down to was that there just aren't many opportunities out there like this one for people like Janey---a chance to socialize with her peers, to have music and dance lessons, to live more of her life not just being home with us.  From what I hear about what's out there for those like Janey once they are 22, she might have many years of being home with only perhaps a day or two of a program a week, so we want to give her what we can for recreation and time away from her dull parents while she's still under 22.  We hope she's getting adjusted to it---there were some reports of tough days at first, with some crying, but we are continuing to be so impressed with her school and how much they care for Janey, and work hard to make her happy and keep her engaged.  We talked to the after school director the other day, and she was making fried rice with Janey---having realized the key to Janey is plenty of food that's been freshly prepared!

We are very happy with Janey's new teacher for the regular school day, too.  Janey still gets to see her beloved Jamie a lot, her high school teacher, but her new teacher, like Jamie,  is so caring and enthusiastic and just seems to get Janey---it's hard to believe she's had as wonderful teachers as she's had year after year after year.  

Over Thanksgiving weekend, Janey has a tough time.  We aren't sure what was up---if she didn't feel well, if she was confused by the afterschool starting, and then it being a half day before Thanksgiving, then a 4 day weekend---Janey isn't a huge fan of routine changes like that.  Whatever it was, she cried and screamed and was unhappy all day long for four days or so.  It was a horrible flashback to the past, when that kind of time happened so much more.  But it was also a good reminder of how far we have come, that we rarely have that kind of time any more.  Most of the time, Janey is pretty content.  She likes what she's liked for years---car rides, watching Tony prepare food and then eating the food, taking way too many showers, and watching certain episodes of certain TV shows or selected scenes of certain movies over and over and over.  Right now, it's mostly Vampirina, Fancy Nancy, Little Einsteins, Encanto and Toy Story 4.  We are never quite sure why she gets into the shows she gets into, but boy, does she love them once she does.

With Christmas around the corner, I have the bittersweet feeling I often get, but less than I used to.  Janey isn't into Christmas.  She likes the music, but otherwise, she doesn't care---she barely notices the tree, she doesn't generally like presents, she isn't happy with routine changes it brings.  I think I've accepted this, and allowed myself to focus more on the boys for Christmas, even now that they are getting into their later 20s.  It's a little bit of a regret of mine, that it took me this long to really accept that what she wants for Christmas is a day like other days, and we can give her that as much as we can while still making the day special for the rest of us.   I hope that all of you enjoy the holiday season in a way that works for your family.  I hope 2024 is a good year for all of us.  Janey will be turning 20, and I hope to keep writing about our journey with her through her 20s and beyond.  Happy Holidays!  Merry Christmas!  Happy New Year!

Summer update

In no particular order, some updates from our summer so far!

The initial genetic testing came back.  It was the kind of testing that looked for single letter changes in genes, not for larger deleted or duplicated portions of genes.  It showed that Janey didn't have Rett Syndrome, as the geneticists thought she might.  What did come up is a disorder that is hard to figure out the significance of, and which might or might not have anything to do with her autism.  It's a dominant genetic disorder that can cause seizures during sleep of the frontal lobe.  It has once in a while been associated with intellectual disabilities, but not usually to the extent that Janey has.  It can cause other sleep disorders, and she certainly does have very unusual sleep issues, but not perhaps the ones this causes.  The interesting thing is that the testing shows she inherited it from Tony.  Neither of them seem to have ever had seizures, during sleep or otherwise.  I was a bit overwhelmed at the time the report came in and I haven't researched this as much as I eventually will.  It's a very rare disorder---only about 100 families in the world, and we do plan to join a study about it.  But for now, it raises a lot more questions than it answers.

Summer school was...mixed.  The first 3 weeks were great.  Janey was in a sleepy mode, and therefore was more than well rested for school, and seemed to thrive.  But starting with week 4, she went into no sleep mode, sleeping very little each night if at all, and when she was awake, she wasn't in a good mood.  We started getting calls from school every day.  If you've ever been in that place, you know it's very tough waiting for that call, and hearing the latest about what has gone wrong.  I fell into a very low mood for a few days there, remembering all the toughest times.  Summer isn't my favorite time of year ever, and with Janey screaming and crying all day, then heading to school to scream and cry more so we got calls to go get her....it wasn't a good couple of weeks. She was also acting up on the bus to a big extent, and we got to hear about that every day as she got off the bus.  But by the last days of summer school, she had cheered up a bit and the very last day, I guess she was even good on the bus. 

At home, Janey loves to do three things most.  She likes car rides, showers and eating.  We do all we can to give her as much of those three things as we can, but there comes a time around 8 each night when she's had multiple car rides, multiple showers, and she's eaten as much as any person on earth needs to eat in a day (usually very healthy food, but even that has a limit).  When we tell her no more car rides, when we report that the shower is closed, when there is no more food being offered---well, you can guess it's not a happy time.  It can feel very frustrating to try so hard all day long to keep her happy, and then to have her get so angry when we finally just can't offer any more.  I know she isn't really intellectually capable of understanding why we are bothered by that, or that she isn't really being fair, but we are human beings with feelings too, and we can get worn down by her fury.

More and more, we realize Janey really craves, in addition to the three things mentioned above, time to herself, time alone.  And that is one thing we can't really give her, not fully.  When she gets home from a car ride, she likes to play in our long driveway.   And that's fine---as long as we are watching her. We live on a busy street in the city.   She isn't an eloper, and she has never gone into the street, but strangers pass by all day, and it just isn't safe for her to be alone out there. But she tries. She attempts to push us inside the house.  She says "You want to take a shower?", hoping to tempt us inside with what she herself would love.  She sometimes is even more direct, saying "Want to GO AWAY???"  It makes me so sad that she can't have that little thing she wants, to just be alone and play.  We tell her we are just going to be sitting there---we won't cramp her style, but of course that doesn't matter.  When she's in the house, she likes it best if she can be alone in the living room, and we do try to make that happen, but our apartment isn't huge and we do even inside have to keep a  backward eye on her.  I wish she was able to have the freedom she clearly wants.  But I don't see a solution here.

Janey will be 19 in a few days.  It's hard to believe.  In so many ways, she's a delight to us.  Even with my griping here, almost every day brings another great time with her, another funny moment or surprise joy.  Today, Tony took her for Chinese takeout, and they waited in the restaurant for her food.  When someone else's order was called, Janey eagerly jumped up to grab the bag, and Tony had to stop her from walking off with it.  Then she saw someone at a big table that looked like it had lots of room, and she went over to try to sit there.  Both these things were done with her infectious smile and joy in life, and people responded to that, by smiling and laughing and being kind.  There is something about Janey that brings that out, in so many people in so many ways.  It's what gets us through it all.  It's what gives us hope on tough days.  It's been a long, strange 19 years, but boy, does she keep life interesting.