As Janey gets older and we get old...

 The less often I write, the harder it is to get started again!  I feel like I have to catch everyone up on everything going on, and that gets overwhelming.  So I'll put it all in a nutshell.  Things have been quite good on the Janey front---she has been happy, loving school, cheerful and not sleeping as badly as at some times in the past...until this week.  This is vacation week here, and it's been a hellish week.  It's like a throwback to hellish weeks of long ago.  Janey has been crying, screaming, not sleeping much at all, unhappy all day long.  Nothing works, nothing at all.  We have tried everything we can think of. 

It won't last.  It never does---that is the thing with Janey.  These awful times are self-limiting.  And honestly, as the years go by, they seem to happen a bit less, maybe 3 times a year.  There are brief days here and there that aren't good, but these extended rough times aren't as frequent.  

The thing is...we are older now.  I hit the big 6-0 a few months ago, and I am feeling it.  Tony is 64.  We don't bounce back as well as we once did.  We very much need good sleep and a few minutes during the day to relax.  This last stretch is feeling quite overwhelming.

I lost my mother in January.  That was tough, although not unexpected.  She had Lewy Body Dementia, and the last 5 years featured a pretty steep decline.  It hits me here and there, a wave of realizing I'll never see her again, never talk to her again.  And it has made me realize, in a vivid way, that life is short.  

Having someone like Janey to care for---it complicates this whole ageing bit.  Tony and I talked about how we want to make the next 10 years as good years as we can.  Hopefully we will live past that, but neither of us are in perfect health to start with, and the stress and chronic lack of sleep don't help.  But we will never have the freedom to do some of the things we want to do---travel together, go on last minute getaways, even go out to dinner just the two of us.  It's just not going to happen.  I always feel compelled to say something positive here---those of you who know me in person laugh at how I am about that---but this week anyway, it's feeling tougher to see the positive.

Except, of course, for our love for Janey.  She has grown into a nearly 22 year old woman who is quite something.  She still surprises us all the time with the songs she sings, her uncanny ability to repeat what we say with her own touch of parody (we call it her "demon voice", repeating something like "go to sleep!" that we have said as gently as we can back to us in a tone that would scare anyone), her beauty and her zest for life and her love of almost all types of food and her, well, just Janey-ness.  She's pretty cool.

That is why I wish we could keep her happier.  It doesn't seem fair to her, that her life is as limited as it is and she also deals with the cyclical moods.

I won't even think right now about the other big thing---the falling off the cliff 22nd birthday, the soon to be end of her school years.  I won't talk about the incredibly frustrating process here in Massachusetts of finding a placement, the people paid to do a job that don't do it (not the schools, but the state), the fear, the anger I feel more and more at a system that just doesn't work.  I won't talk about that.  Eventually, I will, but for now, I just can't.

I find myself less optimistic than I was in my younger years.  I always felt, deep inside, that things would work out.  I don't so much feel that any more.  I still feel lucky, to have a wonderful husband, caring friends, great kids.  But I feel like the world in so many ways is not equipped or willing to deal with severe special needs.  I get angrier than I ever did---at incompetence, at money opening doors than us regular people can't open, at the meanness out there.  

Still---I work to be hopeful.  I have to be hopeful.  Hopeful in the short term---that Janey will stop the crying soon, that she will sleep tonight, that we will be able to draw a breath when school starts again on Monday.  And hopeful in the long term---that we will find a wonderful day program for Janey, one that someday can transition into a place for her once Tony and I are gone.  I hope for kind people, like so many she has encountered in the schools over the years, to always be in her life.  I hope that not just for Janey, but for all her sisters and brothers in this world of severe autism.  

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.  

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!

Struggling a bit

The last three or four days have been tough ones for Janey, and for me.  She's been crying a great deal, more than in ages.  We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).

We really don't know what's up with Janey.  Our best guess is boredom.  Summer school is over and regular school doesn't start until September 9th.  Janey doesn't like there not to be school.  She enjoyed summer school a lot, from all indications.  She likes activity and movement and going places and doing things.  Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one.  The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live.     (Picture is Janey on a better mood day)

Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years.  Like Janey's crying, I'm not sure why.  Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time.  I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family.  It was a great trip, even with a 17 hour train ride out and another back (I don't fly!).  I relaxed so much!  It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with.  Coming home was hard.  Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.

Janey turned 17 last week.  It was a good birthday, one of the first times I felt like she kind of got the birthday thing.  She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day.  Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday.  He turned 24.

Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard.  As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are.  I am working to accept Janey will never be fully toilet trained.  She will never talk in a way that is truly communicative.  She will never learn to read.  She will never be able to be unsupervised.  She will remain much as she is---functioning at a toddler to preschool level for life.  May the future prove me wrong about any of this---I'd love to be wrong.  But I am not wrong. 

I try very hard not to let myself get depressed or in a self-pity spiral.  This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion.  It's for a couple other reasons.  One is that knowing myself, I do better if distracted.  Letting myself go to dark places feeds on itself.  If I make myself stay busy and chipper and active, I feel better.  The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey.  Someone still needs to care for her.  And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver.  The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality.  Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.

And so---what do we do?  We do what all of you do.  We get by.  We wait eagerly for school to start.  We take Janey for as many rides as we can.  We comfort her as best as we are able.  We trade off sleep, we trade off eating, we trade off moments to recover.  

I can't give in to depression, but I can admit to it.  It's a tough life.  It's tough for Janey, and it's tough for us.  Love to all of you out there living a similar life.

 

The Question

 A few weeks ago, I had my 5th bout of diverticulitis in 3 years, and this time, went to the emergency room, as it had been only 3 weeks since the last bout (and only about a week since finishing antibiotics for that bout).  To my surprise, I wound up being admitted.  I've never spent a night in a hospital for my own illness except for being born and having my three kids.  It was eye-opening!  I don't know if any other mother of a child with special needs has had the silly fantasy I've had, of a couple days rest in a hospital bed, guilt-free because you don't WANT to be there, but HAVE to be there.  At some of the toughest moments of parenting, I've thought about how I could lay there, get food delivered to my bed, read, relax and not feel like I was being a bad mother being away from Janey.  Well, as I imagine most anyone who has actually spent sick time in a hospital knows, that was a pretty deluded fantasy.  I was in a double room, slept not at all due to a roommate who was having a lot of night issues which involved pain and screaming and yelling at nurses.  I couldn't eat at all, due to my illness. I didn't read a bit, due to being anxious and also having a coffee withdrawal migraine that just about did me, and I felt guilty being away even under the circumstances.  I stayed two nights, and was very happy to come home when I did, on heavy antibiotics and with an appointment to discuss possible surgery for my diagnosis, smoldering diverticulitis, a rare form of diverticulitis that never really goes away despite treatment, except if you just cut out the sections that have it.

I'm okay for now, but what looking  back hits me the hardest about the whole experience is the question I was asked by a doctor as I was being admitted.  I should have seen it coming---I know it's something they ask, but I didn't.  After going over my medical history, medications, stuff like, the doctor said "Now I'm going to ask you something else.  If something unforeseen and tragic were to happen, and you were dying, would you want everything done to keep you alive?"

I was thrown for a loop for a minute.  I just didn't know what to say.  After thinking a bit, I started on a long, rambling speech about how of course if I were brain dead and had no hope of conscious life again, or if I were going to need life support forever....those kind of provisos.  But she said (and I don't think this lady had the greatest bedside manner) "We are asking it more like a yes or no question".  And so I said, before I thought about it more, "Yes!  Revive me!  I have a 16 year old daughter with severe autism and I have to live forever!"  She answered "That sounds very reasonable", probably taken aback by my lack of basic knowledge of the inevitability of death.

And of course, in the moment, I meant it.  I've thought, as we all have, about how someday my children will hopefully outlive me.  But to think of it concretely, as a question like that, not that it was probably going to come up from that hospital visit, but thinking of it as something that COULD happen---wow.  It's a scary, scary thought.  

It was interesting how Janey reacted to my being in the hospital.  I've gone away for close to a week at a time before, to visit my parents in Maine, and I plan to go again this June, but those times, I prepared Janey well in advance.  I talked to her a lot about when I would be leaving and when I would come back.  This time, she came home from school on a Monday and I wasn't there.  She knew I was in the hospital, and I think she probably related that to when she herself was in the hospital, for something far more serious.  I think she was scared, although she really couldn't express that.  When I got home, she clung to me for a few days---something she almost never does.  I talked to her about what happened, reassured her I felt better, told her I didn't think I'd have to go back to the hospital soon but that if I did, I'd be home again after that soon---all that.  But with Janey, we never really know what she understands.  

Lately, we've noticed Janey is quicker to burst into tears over things.  Sometimes we have no idea what is up, but often, it's when she overhears us talking about anything even slightly upsetting.  I don't know if she reads our tones or understands or words or a combination of both, but she certainly is affected by what is said around her more and more.  She gets over this tears pretty quickly, and that kind of emotional up and downs is certainly something not foreign to any teenage girl, but unlike most of those girls, it's very hard for her to understand degrees of seriousness, to be reassured by reason and facts.  She lives in the present.  Even telling her we'll give her a car ride in a few hours or that school will be back after a vacation is more than I think she really can grasp.  We explain and reassure anyway, because we really don't know exactly what she does get, but it breaks my heart to think of her scared by her lack of understanding.

Before I was admitted, while I was in the emergency room, there was a woman a few beds down.  I never saw her, as there were curtains up, but I certainly heard her.  She screamed almost non-stop, for four hours.  At first I wasn't sure she was verbal, but then at a few points she stopped to ask for specific painkillers, and from the nurse's not quiet talk outside my curtain, I gathered she was seeking drugs.  But there was more going on than that, and I heard a nurse talking to a supervisor at her group home.  I don't know her story, of course, but of course, I thought of Janey.  I thought of her in pain, being brought to a hospital unable to communicate.  There didn't seem to be a lot of sympathy or caring for that woman, which I guess I can get---her screaming was pretty loud, and she was doing other things like making herself throw up and lashing out.  But still---I drew parallels, ones that might not be there, to Janey, to those who for so many reasons are not in the mainstream of society, who can't advocate effectively for themselves, who will always be dependent on others.  And that certainly added to the kick in the heart that I felt a few hours later when asked about my own mortality.  I have to live forever.  Janey, I wish I could.

"Listen to my mouth!"

Janey overall was having a fantastic day yesterday. She was cheerful and upbeat and fun, loving listening to Christmas music with me and having a car ride with Daddy after a day too snowy for a ride the day before. We were enjoying her company so much. Then, as happens, something changed. She started crying, screaming, freaking out over everything. We had no idea what was going on. I snuggled with her on her bed and tried talking about it, asking the same old questions I'm sure she's sick of---"What's wrong? Why are you sad? Does something hurt? How can I help?" She didn't answer. William came in the room and I asked again what was wrong, and somehow the combination of him being there and my asking seemed to bother her a lot, and she hit me hard. I stayed calm, told her that I didn't like being hit, told her I wasn't going to stay snuggling with someone who was hitting me, got up and walked away. She screamed and screamed and screamed.

 After a little while, when I'd gotten her to say she was sorry (with much prompting, and who knows why I ever bother, because I don't think she means it, but I need to have her say it), I went back to snuggling her. She then looked at me intently, stared in my eyes with a look that was unusual for her, and said, twice in a row "Listen to my mouth!" I don't know what it meant. I really don't. I don't think it meant to listen to what she was saying. Maybe it did. But she usually doesn't use language like that, in a slightly indirect way. And she wasn't saying anything about why she was upset. But it meant something. She took the effort to say it, and you could see it was an effort. I stayed up a long time in the night, trying to figure it out. It finally came to me that it might be related to what doctors say "I'm going to listen to your lungs now. I'm going to listen to your heart" I don't think she could pull up the words "lung" or "heart", and she might have been saying something in her mouth hurt and she wanted e to see that, or that she just felt sick and wanted help from a doctor. But she doesn't seem sick, doesn't have a fever, doesn't have low oxygen. In this COVID times, taking her to the doctor when she doens't seem sick is not really a good balance of safety and health. 

 The whole thing brought out so many issues. Why does she get upset out of the blue? Why is it so hard for her to tell us what is wrong? Why does she hit once in a while? What do mysterious phrases she says to us mean?

 The hitting seems like her way to say she's really, really seriously not liking something. She doesn't do it often at all now, and when she does, it doesn't have the feel of something spontaneous. It feels like a planned thing, at least planned a few seconds in advance. The last time she really hit me was when we were trying hard to do Zoom classes, and I told her it was time for one. I think last night she was telling me she really didn't like my endless questions. Of course, hitting is not at all the way I want her to communicate, and I need her to know that, but I also need to listen to what issues are upsetting enough for her that she feels she has to hit. 

 The "listen to my mouth"---phrases like that are about as frequent as hitting, not very frequent at all. You can tell she thinks about them before saying them. The way she looked at me was very striking. I could tell she really wanted me to pay attention. And it makes me feel awful that I wasn't able to quite get her message.

 It's frustrating so often, figuring out Janey's needs. I don't want her to be unhappy, but of course, like all of us, sometimes she's going to be unhappy. But it's so hard not knowing why she's unhappy. Was she just sick of being around me? Did she think about something upsetting? Did something hurt? Was it just too long a day, and she was tired? It's hard dealing with this, but of course I'm sure it's a million times harder for Janey, being so upset but so unable to explain why, doing her best to let me know in the way she can but not having me get it. Janey, I will try to listen to your mouth, and your heart, and your mind, and all of us. I am trying hard.

How would we have done it?

One phrase that I think most families with special needs children don't like is "How do you do it?", sometimes phrased as its twin "I don't know how you do it!"  We know the phrase is usually meant in the kindest of ways, and that it's an acknowledgement of some of the struggles our families can face.  But it can feel hurtful in a couple ways.  One is that it makes it seem like our child has created a situation so difficult that others can't even imagine what it would be like to live our life.  Another is by saying, in a way, that we ARE doing it, by making us somehow separate, set apart, somehow as a family unit handling it all ourselves, and not in need of help, due to our superhero status.  Both views of our families are untrue and unhelpful.

That being said, lately I've been thinking a version of the "How do you do it?" myself.  It's in the form of "How WOULD we have done it?"  How would we have handled this pandemic, this lack of school, this isolation, during what I always think of as the Tough Years---approximately from when Janey was 5 until 10?  Those years...wow.  Those were the years in which an inclusion school which aimed to include all special needs students realized they were not up to including Janey, and then, while in the autism program she moved to, she was so unhappy and angry that the day came that I got the call that she wasn't even safe to go home, that we needed to come to the school to go with her by ambulance to the emergency room, the start of an ordeal which include six horrible days at Children's Hospital and 3 weeks of Janey being in a psychiatric hospital.  Those years featured many, many days where Janey screamed all day, literally, days when she bit herself hard, days when she cried heartbreaking tears for hours, nights of her fury and sadness that seemed like they would never end.  But during those years, there was school.  We had about six hours a day when we could sleep (or often, just I could---Tony was working, most of that time at a job an hour from home, and how he ever lived through those years I'll never know), recover, breathe, know that she was cared for.

But what if the pandemic had been during those years, and there was no school?  I think about that all the time, and I truly wonder how we could have done it.

Of course, the thing is, lots of other people with children with severe autism are living through those tough years right now.  And I think about them, all the time.  I think about how it must feel to have a child so desperately unhappy, and to be trying so very hard to help them, and having absolutely no respite---no school, no activities, no nothing.  I think of them trying to think of ways to fill the days, and to get some rest.  I think of the siblings, trying to learn at home in a household that might be often filled with screaming or hitting or crying.

If COVID-19 had happened during the Tough Years, I have to say honestly that I would have sent Janey back to school the second school was open, even if I wasn't sure it was safe, even if I had huge fears about the virus.  I would have sent her because I would have known that we simply had to---in order to stay sane---not just us as parents, but her too.  I would have taken the risk, the possibility of sickness weighed against the absolute knowledge of what more time at home would be like.

This knowledge is why I am not sure how I feel about schools staying closed. If we lived in an ideal world, I would feel sure they should stay closed, but we don't live in that world, and I know there are families out there right now just barely hanging on.  I think about the teachers, with families of their own often, and I know they will be put at risk going back to in-person school, as well as the aides and lunch workers and bus drivers and therapists.  I worry about all of them.  But I can picture most, of course, the situation we have lived through, the child who needs help so badly and the family so extremely stressed by that child's needs, and I worry so much about how they are managing to go on. I know some of you reading this might be living that life right now, and feeling like you are very alone. I wish I could help more. I wish I could come to your house and take care of your child for a day or two, so you could sleep and recover. I wish I had magic.I wish I could fast-forward your life to calmer years.  But right now all I can do is tell you I am thinking of you.

We are so lucky.  Janey, at almost 16, is happy most of the time.  Aside from a period of adjustment at first, and from the days she got upset by Zoom meeting school, which we will no longer do, she has been a champ during this time at home.  We are enjoying her.  Most of that is just her maturing.  Some of it is changes we made, changes in our expectations of her and also changes in our lives.  Tony retired early, which has been a financial challenge but without a question absolutely a right decision.  The boys are older.  We are okay.  We hope that Janey can safely go back to school at some point, because she loved high school, but for now, we are okay.

I hope all those in the places of decision making do give a thought to those who are in the Tough Years of severe autism.  I hope we can find a way to help those families get through this.  I won't say to them that I don't know how they do it.  I know how they do it.  They do it day by day, hour by hour, minute by minute.  They do it because they love their kids, their amazing kids.  But they need help, and we as a society need to figure out how to help them, especially in these extraordinary times.

Mostly Sunny---a Janey report

Sometimes I miss writing more entries in this blog!  But other times I know I'm writing less because life with Janey is less intense than it used to be.  Still, I plan to continue this blog as long as I'm around to write it.  It's interesting and cool to think of the girls that are growing up along with Janey, ones I met through this blog when she was just three and who now are teenagers or young adults, and it's also great knowing some families with younger girls (and boys) are able to at times get a glimpse of what growing up as a family with an autistic member is like.

So, how are things with Janey?  Mostly sunny!  High school is off to a very good start overall.  We went to an open house a while back, and got time to talk a lot to Janey's teachers.  She has four teachers, with one being her homeroom teacher.  The rooms are all connected, and the kids move from class to class within the connected rooms.  Her teachers all seem incredibly good.  It's just amazing to us always what great teachers Janey has had.  It's wonderful hearing them tell stories about Janey.  You can tell they get her, and that they like her!  That means everything to me.  Lately her homeroom teacher has been sending us pictures of Janey at school along with reports.  I love seeing the pictures!  It's so cool to get to see Janey's days that way.  With the rise of smart phones and having a camera always around, I hope more teachers are sending pictures to parents, especially to parents of minimally or non-verbal kids.  A picture really is worth a thousand words.

A few weeks ago, Janey had a tough week.  She cried all day for about a week, and did the same at school.  Even coming in the middle of a long great run, it was very upsetting.  I think a lot of you can relate to how we flash back to the worst times so easily.  It's not Tony and my default thought "Oh, she's been happy for a long time and she's be happy again soon!  This is just a little glitch!"  Instead we think "Here we go.  It's going to get worse and worse and worse.  She'll probably end up back in Rhode Island (where the psychiatric hospital was that Janey spent time in when she was 10)"  I think it's a kind of PSTD.  It's very hard to take a step back and just think "Let's ride this out and see what happens".  But in this case, after the awful week, Janey suddenly became happy again.  She got off the bus one Friday afternoon and was happy, and has been happy since.  I need to try to remember that!

The other night, Janey wanted to watch a certain Angelina Ballerina.  Hulu and Netflix constantly take Angelinas off and on, and it's frustrating.  To buy an hour long episode often costs about $15---to have it permanently to watch.  Janey wanted Shining Star Trophy, which has been one of her favorites for a long time, but it wasn't available and I didn't want to spend the money.  We are being very careful with money now that Tony has retired early.  So I said no.  Janey threw a fit---screaming and crying and flinging herself around.  This was after the tough time had passed, and she was so sincere in her sadness and anger I thought to myself "What the heck?  What does she ever ask for, anyway?" and I bit the bullet and bought the show for her after having said no.

Janey at school

Later that same evening, a very interesting thing happened.  I told Janey it was bedtime.  She wasn't pleased.  Usually she'll just get up over and over if she doesn't want to sleep, but this time, she looked at me for a minute as if she was thinking something over, and then started to scream.  Somehow, I knew right away this was a different scream than I've ever heard before.  It was fake.  It had a whole different tone to it. 

To be honest, I was thrilled.  It was the first time EVER I have seen Janey consciously throw a fit when she wanted something.  Other times, she's certainly thrown a fit, but it's the much more common fit, one of not having the words to explain, one of pure unhappiness.  This wasn't that.  It was a deliberate thing.  I have no doubt about that.  I said, calmly but firmly, "Janey, it's time for bed.  Turn off the TV, put down the remote and get in bed"  And she gave me another long look, as if deciding what to do, and then did just what I asked, quite cheerfully.  You could almost see her thinking "Well, it was worth a try"

It's so cool to see that Janey is still developing, still learning, still maturing.  It takes her longer than most kids, but she does make progress in so many ways.

High school doesn't require uniforms.  When I see Janey dressed in school clothes, regular teenage girl clothes (although of course ones I pick out, but I do try to dress her in clothes her peers might wear), it sometimes takes my breath away.  It's funny---I can remember 15 so well, and having a daughter that age---it makes me think of how much she is her own person.  Like everyone else, she is different than her parents, not just because of her autism, but just because she is who she is.  I am so proud of her.  I look forward to watching her become an adult.

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.

Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

Ideas for the toughest times

Now is not one of the toughest times with Janey.  It's been an overall good couple of years, which is an amazing statement to make, in that it has "years" in it. But this weekend Janey was a bit unhappy, with more crying and screaming than we've seen lately, and of course, it flashed us back to the toughest times. And it made me think---there's a lot of advice and ideas out there for those with newly diagnosed kids, and for daily life, and for tantrums and so on---but what about advice for the times that quite frankly are hellish?  If you haven't had times like that (yet), I hope most sincerely and strongly you never, ever do.  But most of us parenting a child with autism have, or will, and I have a few thoughts about getting through those times.  

Toss out the regular rules

When times were toughest with Janey, during days when she literally screamed all day, or cried all day, it sometimes took me longer than it should have to realize that it wasn't the time for consistency.  I at first would cling to the notion that if I gave in and did unusual things, like let her watch TV all night, eat chips all day, go for car rides day and night, take showers all day long, that it was going to somehow set a bad precedent.  I now realize---who cares?  When times are as tough as they can be, you are focused on survival.  If something gives you five or ten minutes of a happy or at least not as sad a child, and it's something that won't hurt them or you, do it.  You aren't in regular times.

Trade off

This is the time to beg your spouse to call in sick or take some vacation time.  If you are a single parent, hopefully you have someone that can help in times of emergency.  Either way, you MUST get a break now and then.  It can seem impossible, and you can feel as I have at times that you have to be there.  But even if it's only for 5 minutes, you need to have time to recover.  You need to be able to breath.  I remember the times Janey was in the hospital, when I'd get a chance to go eat in the cafeteria.  Those 15 minutes or so would feel like a miracle, and I'd come back able to go on.  And I remember times for whatever reason I couldn't take a break, and feeling quite literally like I could not go on.  You NEED to grab moments for yourself.

Get some mental support from those who get it

I am very, very lucky to have made some friends through this blog who are fellow autism parents.  I hope the rest of you are as lucky.  When you are in the midst of a crisis time, you need to be able to talk to someone who gets it, without "it" having to be explained. You need to be able to speak freely, to rant and rave and cry, to have someone who won't say "now, it's not that bad", to have someone who doesn't necessarily offer advice but just listens, to have someone who doesn't say something like "You REALLY need to get respite care!" when there IS no respite care...that kind of person.  That is part of why I made the Facebook page.  If you ever need to, post there.  I can guarantee there are others there who get it, and will listen.

Put off going to the emergency room as long as you can

You might not have been thinking emergency room, but I think most of us have had that thought at times, when your child has been screaming or biting themselves or banging their heads or crying for days.  It IS an emergency, and it's reasonable to think ER in an emergency.  And I would never, ever discourage anyone from getting help, but I know, from personal experience, that the ER is not a good place to be in a crisis.  It might be necessary, in order to get the next level of help, but it's a nightmare while you are there.  All my life, until my dying day, I will remember the approximately 24 hours we spent in the ER at Children's Hospital, before getting a room, as the worst 24 hours of my life, and the worst 24 hours I hope beyond hope I will ever have.  The ER is not set up to deal well with children with autism, to say the very least.

Don't be shocked if your child winds up in a psychiatric hospital

I was shocked.  I never, ever saw it coming, even though Janey was certainly in crisis.  When her school called and said they were sending her to the hospital by ambulance, well---I can't really describe that moment well.  And then when she was seen there, and the psychiatrist said she needed to be in a psychiatric hospital---again, blindsided. Sure, things were pretty bad.  Horrible, even.  But for whatever reason, I just didn't realize what that probably meant.  I won't get into right now whether the psych hospital was the right place or not, but I can say it was a safe place for her, and if nothing else, it let us recover for a few days while she was being taken care of.

Take it from me---it WILL get better

If anyone had told me how relatively calm and happy the last few years have been with Janey when we were in the midst of the toughest times, I would have laughed at them.  It did not feel possible.  It truly didn't.  But it was.  And talking to quite a few other people who have lived through such times, I've found that it does get better for almost everyone.  I'm not making promises about WHEN it will get better, or how long it will STAY better, but the very worst times somehow seem to be self-limiting.  If you can make it through those weeks or months, and keep yours sane and alive, there will be a day when you can look back at them and, no, not laugh, but marvel.  Marvel at how you made it through.  

Summer without dread (mostly)

Smiles on the train

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

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

Rest with William on the grass

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

Picking out a donut

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

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

South Station, Boston

Walking along the Rose Kennedy Greenway

At the Autism Whatever time of year, challenges, hopes, dreams and love

Over the years, writing this blog, my goals have been a few things.  One is to be honest---to write about how I really feel and how my life with Janey really is---to try my hardest to stay clear of any particular philosophy or approach that will limit how I feel I can express myself.  Another is to be respectful of Janey, to do my level best to represent her in a way she would want to be represent herself, if she were able to write.  And third, to give support and encouragement to others---to let them know that it's possible for things to get better even when they seem impossibly hard, to give them a virtual hand to hold when times are tough and to celebrate along with them when our girls surprise and delight us with their triumphs.

It's that time of year again---the time that goes by various names---Autism Awareness or Acceptance or no name at all because it shouldn't be a day, it should be all the time, or whatever.  It always makes me think I should write some kind of summing up post, some kind of meaningful conclusion post.  I had some things in mind, but today turned out to be a tough day.  Janey is not happy.  There's a lot of screaming, a lot of crying.  I am feeling discouraged, and that always makes it hard to stay positive...it makes it feel very fake to stay positive and upbeat, at least in the short run.

Where are we today? Overall, in a fairly good place, despite today's mood.  We had Janey's three year re-evaluation IEP meeting on Wednesday, and it was a good one.  She is making progress in ways she hadn't been for a long time---with talking, with learning skills, with expressing her needs.  Tony and I were very happy, as we almost always are, with the level of caring and understanding those working with Janey showed.  It's an example of this that one area she'd regressed a little in was "attention seeking", and her teacher remarked that is probably because she is almost always getting attention without having to seek it---that she knows more people in the school than most the teachers, and they all want to interact with her---that she draws people in.  That made me very happy, and it's something Janey really does do.  She's got an engaging personality, and we are seeing more and more of who she is as she gets older.

The biggest challenge I see for the next three years, if we look at Janey's life in three year blocks, is providing her with an interesting life.  At one point today, while crying, Janey said "I'm so bored!"  We've never heard that before, and I think it was a quote, but as so many of her quotes, it was used in context.  I asked her "Do you wish it was a school day?" and she said "WISH IT WAS A SCHOOL DAY!" very firmly.  Sometimes it can make me cry to think how limited Janey's life is.  She is nearing thirteen.  When I was thirteen, I started high school.  I had friends and crushes and homework and activities and hobbies.  I worked, babysitting and helping in my mother's store.  I wrote letters and diaries and read hundreds of books.  I walked for hours on the shore.  What does Janey do?  She goes to school and she comes home.  She watches videos.  She eats.  I need to expand her life.  We need to find activities for her, not busywork but activities she will really enjoy and be able to participate in.

Longer term, we need to start thinking about what Janey's life will look like as she becomes an adult.  How do you plan a life for someone like Janey?  At the IEP meeting, it was mentioned that sorting things was good training for sheltered workshop type work.  I have to say---that's not a goal of mine.  If you measure Janey's intelligence with any standard method, I know it would look like it should be a goal, even probably a rather ambitious goal.  But I don't think you can measure Janey with standard measuring tools.

I used to believe that people who said things like "There are many kinds of intelligence" and "IQ is just a meaningless number" were, well, I don't know...not correct.  But my thinking on that has changed radically.  Janey is very, very smart, in ways those tests can't measure.  She is smart in her own ways.  I can honestly say she has intelligence that can't be measured with tests.  She shows it with the song connections she makes, with the quotes that perfectly match situations, with her sense of humor, with her dancing and organizing and sophisticated palate.  I don't look at her, ever, and see a person with limited intelligence.

So---what do I hope for Janey?  I hope she has joy.  I hope she finds a way to pursue her interests and use her talents.  I hope she is able to find the care that she needs for the areas that she needs help with.  I hope she is always surrounded by people who love her and find her interesting.  I hope that she can rid herself of some of her demons, of whatever it is that makes her so unhappy often.  I hope she never encounters cruelty.

And what do I hope for myself?  I am realizing that's fair to ask, also.  I hope I can balance Janey's needs with my own.  I hope I value myself enough to do what I need to do to be healthy, for Janey and for myself.  I hope I am able to pursue my own interests and dreams without that hurting Janey.  I hope for a balanced life, one where of course my most important role is mother---to Janey and her brothers, but that I also am able to enjoy my own passions---that I can garden and read and travel and laugh with friends and have a life that is happy without that taking away from Janey's happiness.

I don't know what to call this time of year.  But whatever you choose to call it, I wish those with lives touched by autism happiness and love.

Daytime Bedwetting, Crying, Guessing...

Toilet training.  I'd say I'm an expert on the subject, having been training Janey for about 10 years now, but that's a case where the longer you've worked at it, the less of an expert you probably are.  

My dear friend Michelle and I talk on the phone quite a bit.  Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey.  She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.  

I used to think that there would be an endpoint with the whole potty-training deal.  There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't.  It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.  

Right now, at age 12, Janey almost always uses the toilet for bowel needs.  That is wonderful.  I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.

For urine, Janey uses the toilet in some circumstances.  She wears underwear to school every day, and rarely has an accident there.  Out of the house in general, she does very well.  On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident.  Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes.  At home, though, it's much more of a chancy thing.  I'd say she uses the potty about 50 percent of the time for urine at home.  it's the other 50 perfect that is very, very tough.

For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home.  I'm not talking during sleep here.  We put her in two pullups at night, and we probably always will.  I'm talking when she's awake.  She will go over to the bed and wet it, in the daytime.  As you can well imagine, we are not huge fans of this.  We have tried everything we can think of to discourage this behavior.  We take her to the bathroom on a very regular basis, and try to get her to go.  We do everything we can to keep her off her bed when she might need to go.  We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it.  This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.

This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting.  We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep.  I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.

Coincidence or not, Janey has been doing a fair amount of crying this week.  She cried a lot after school last night, and she woke up crying this morning.  Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?"  Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it.  Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?"  The answer was clear.  I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying.  I don't know why she does what she does with the bed.  But I know that I can control how I react to it.  I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her.  But if she does do the daytime bedwetting, I can deal with it in a matter of fact way.  I can keep myself from getting angry.  I can just accept that for now, that is how things are.

I told Janey "I'm sorry I got upset about you peeing on the bed.  I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up.  You don't need to cry about it.  It's okay"  Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something.  And she smiled, for the first time of the day.

I wondered, after Janey went to school, if I was doing the right thing.  Then I stopped myself from the worrying.  I reminded myself, as I've learned to do, that there is no right way with Janey.  There's no book that tells how to parent her.  I'm writing her book.  I don't know how the chapter on toilet training will end.  It might never end.  But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.

Two Non-Fluent Speakers

I read a lot of books about people going to live in cultures new to them.  It's an armchair travel thing---I doubt I'll ever really live that life, but for some reason, it fascinates me.  Often, the people in the books end up having conversations where both speakers are not fluent in each other's language.  They get by on the words they know from the other language, with a lot of guessing and a lot of misunderstandings.  It struck me today that that is what Janey and I do.  She's not fluent in English, and I'm not fluent in Janey-Language.

The double non-fluency can make communications very tough.  A good example happened this weekend.  Janey was crying, and said to me "Does your eye hurt?"  She often does that, reverses the pronouns and says what she wants me to say.  I asked her to use my hand to touch where it hurt.  That for some reason seems to work much better than having her point.  She took my hand and put it next to her right eye, and then tried to get me to poke at her eye.  I said "I can't poke you there, but let me look at the eye"  I didn't see anything, but it was obviously bothering her.  She then said "My eye is bloody!"  The eye wasn't bloody, but I was proud of how she worked hard to use her non-fluent English to tell me how upset she was over the eye.  I think it was a dry allergy type eye issue.  We took a shower and she felt much better.  But I wished so much we were able to better communicate, that she could have told me exactly how it hurt, that I could have reassured her that it looked fine and that it wasn't anything serious.

Janey woke up this morning crying hard.  The crying is communicating, of course, but I can't understand the specifics of it.  I had no idea what was upsetting her.  We went through the regular morning routines, with the tears still flowing.  They lasted until she went out with Tony to wait for her school bus.  Then she instantly cheered up and was hugely happy getting on the bus.  Although I started the day saying to her "It's a school day!" as I always do when that is the case, I think she somehow wasn't sure it was really a day to go to school.  I think she was upset it was going to be another dull old day at home with Mama and Daddy.  That's my best guess, anyway.  I wish so much, more than I can possibly say, that she could tell me why she's sad when she is.  And I wish I could communicate back to her, that if my guess was right, I could have reassured her that it was indeed a school day.

If there was a way for Janey to be fluent in English or me to be fluent in another other means of communication that would work for her, I would do it.  It wouldn't have to be spoken, of course.  If she was able to  use sign language, or typing, or an iPad talking program, or anything at all, I would do anything to communicate that way with her.  But we have not found that way.  We both remain non-fluent in each other's language.  The onus is on me.  I truly think Janey thinks I can read inside her mind.  I think she thinks I know what she is thinking.  I can't even start to imagine how frustrating it must be when she is clearly thinking what she needs, and I don't respond.  I think she resorts to her English and to crying and screaming when she thinks I'm not responding.  So often, she'll bring me the remote and I'll say "What do you want to watch?" and she'll answer "That one"  I'm sure she has a specific show in mind, and she just can't understand why I insist on making her say it in spoken English, which is so often a struggle for her.

Until we find a common language we can both be fluent in, I will keep trying to work on better understanding what Janey says to me.  I will keep trying to help her better understand and use spoken English.  I dream of the day we can communicate with ease.

Unclouded day after

I was discouraged yesterday, as you might have read in the post I wrote.  Last weekend was long, with a lot of screaming and crying from Janey, more than any weekend this summer.  We had gotten used to the sunny Janey.  For so many years, a troubled day with Janey led to a troubled few weeks.  It's hard to believe, to accept, that Janey does recover much more quickly than she used to.  Even after school yesterday, she was happy.  And then there was a "toileting incident", the kind that takes a long time and many loads of laundry to take care of.   I wrote my discouraged post, and linked to it on my Facebook page.  And so many people responded.

I don't think I can ever really explain how much the support of others helps me---others living this life, or those who understand it.  I can't even imagine what it felt like to be a mother like me in the days before the internet.  I would feel, I am sure, like the only person on earth with a life like mine.  Instead, I know there are so many others who get it, who pick me up, who have helped me through some very tough times, who have rejoiced along with me at the good times.  When I woke up this morning, not sure what the day would be like, and read all your comments, read the kind words from Mary and Maura and Catherine and Fab and Kathleen and Maryann and Cynthia and Aileen and John and Rachel and Michelle and Nancy and Shanti and Antti and Grace and Julie and Sophie and Beth---wow.  For some reason I went back and read again about times during Janey's two long hospitalizations, and the overwhelming kindness shown to me by so many then, and I thought about our recent visit to meet Michelle and her wonderful family in person, and I thought about my husband and sons and extended family, and high school friends I have reconnected with on Facebook,  and people like Maryellen, who sat with me during so many days in the hospital---and I was overwhelmed.  I hope you all know how much you mean to me.

 So---today is better.  I had a wonderful morning with Janey before she got on the bus.  She was happy, calm and engaged.  We did our favorite walk, to the "ice cream store", and she picked out not chips or ice cream but a jar of salsa, and we waited for the bus listening to "I'm Gonna Wash That Man Right Out of My Hair" and we smiled and hugged each other and enjoyed the summer weather as we waited.  It felt like the unclouded day in the song Janey loves so much.