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.  

Hearing the Singing

 Around this time every year, early November, I break out the Christmas music.  It's hard sometimes to even wait that long, because I love me some Christmas music, but I make myself.  And every year, also around this time, I offer to sing Christmas songs to Janey.

Janey doesn't have me sing to her as much as I used to.  Frankly, I'm not exactly a great music talent (unlike her older brother William, who truly is, or what I suspect Janey might have been in alternative universe), and Janey is not one to suffer fools or out of tune people gladly.  But this one time in the year, she is excited enough that Christmas music season is back to let me sing, and so today, she gave me one of her priceless smiles after my singing offer.

To start the Christmas music season,  I sang "It Came Upon A Midnight Clear".  Long ago, my beloved grandfather told me it was his favorite carol, and that has stayed with me.  But apparently the words to it haven't, quite as well.  I sang the first half of the first stanza, up the harps of gold, and blanked out.  Janey didn't seem to mind.  She quickly got back on her phone to watch more of Toy Story 4, for the truly about 100,000th time.  But after just a minute, she put down the phone, and perfectly, without missing a word or a note, picked up where I had left off..."Peace on the earth, Good will to man, from heaven's all gracious King, the world in solemn stillness lay to hear the angels sing"

I am not religious, an agnostic at best.  But hearing that, the words, from my daughter, someone who the world might see as severely intellectually disabled (and not wrongly, for in many ways, she is), someone who at times can scream for many hours in a row and stay awake for night after night, someone who just in the past few days has had a few crises...moments like that can stop me in my tracks.

I always plan to write here more.  Sharing with those of you living lives that parallel ours has kept me going these many years.  But for so many reasons, it's harder now.  For example, as I sat down to write here, my father called to discuss a medical issue with my mother.  Her Lewy Body Dementia has been a challenge and a scary wake-up call to how hard it all can be to balance.  I often feel overwhelmed, and when I think about next August when Janey turns 22 and we no longer have school---I feel terrified.  

But I will continue to share moments like these, good or bad.  Let's hope for always more good than bad.

My mother has Lewy Body Dementia

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

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

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

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

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

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

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

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

What did and didn't bother me about what RFK Jr. said

 I reacted strongly when I read about what RFK Jr. had said about autism.  If you have any awareness of the autism world, you probably already know, but here's some of what he said...

"Autism destroys families, and more importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this," he said. “These are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. Many of them will never use a toilet unassisted."

I reacted strongly.  I was most bothered by him saying that autism destroys families.  That hit me hard.  I think what bothered me most about that was that felt like he was putting blame on people like Janey---like he was saying that someone like her destroys a family.  I don't think he meant that, totally, but it made me angry and upset.  I was also upset by his choice of examples of the things people like Janey will never do---holding a job, paying taxes, playing baseball, going on a date.  It felt like he was saying that she and others like her aren't holding up their part of society---that she doesn't contribute anything valuable to the world.  Again, that might not be what he meant, totally, but it hit me that way.

I've seen a lot of people in the autism world saying that they are glad that people are speaking out about severe autism, profound autism, the kind of autism that isn't glorified on TV shows, the kind that can't be self-diagnosed because those with it aren't able to express concepts like that, the kind that isn't simply a different way to seeing the world, but rather a life-long disability. And those people have a point, a good point.  It's a very telling thing that Janey wasn't upset by what was said.  That is because she has no idea what was said.  She can't read, she doesn't know who RFK Jr. is, she doesn't know what autism is.  And so the hurt at his statements wasn't something she felt.  And yes, I am glad that voices of those caring for someone with severe autism aren't being silenced, as I think they were for quite a few years.

But the vital part missing from what he said was the humanity, the value, the innate personhood of someone like Janey.  If all you knew about severe autism was what he said, you would not picture someone like Janey, or like so, so many of the people I've gotten to know through this blog, either in person or virtually.  You would not picture my beautiful, fascinating girl.  You would picture a burden, a sad, suffering burden.  I don't think what he said was a call to provide more help to the people like Janey.  I don't think he's proposing funds for more housing, more respite, more recreational opportunities.  I think he's mostly interested in PREVENTING people like Janey from coming into being, not in helping people like Janey who are here.  

I feel like there is a balance that can exist in talking about severe autism.  Without really intending to, it's what I've been trying to do for the last 17 years in writing this blog.  I want to be honest---completely honest---about the challenges that having a child like Janey can pose.  I have tried very hard to be honest about the tough things---and there have been plenty of tough things.  I have done that for a few reasons.  One is because I felt often that the truth of autism parenting was something that wasn't being talked about, that we parents were being told directly or indirectly that being honest about how hard it could be was wrong.  I wanted to let others know they weren't the only one---that there were other families like theirs.  And I needed to hear from others for my own sanity, so I knew that I wasn't alone.  I also wanted to be honest so that hopefully those in the position to help with the kind of things we desperately need help with would understand our needs.  We need respite.  We need programs for when our loved one with severe autism turn 22 and age out of school.  We need kindness.  We need medical care that understands severe autism.  

However, it was and is extremely important to me to also show the joy Janey brings to us as a family, and the joy that others like her bring their own families.  I want to show how cool Janey is, how much fun she can be, what a important and valued part of our lives she is.  I love sharing stories about Janey, how she uses her limited speech in amazing ways to get across her point, how her smile can melt hearts, how her love of music transcends her limitations.  Every person with autism has value, has importance, has a place in the world.  

There is a horrible thing I often think about.  It's that one of the first groups of people that Hilter killed was children with severe disabilities, and that he did so saying that they were a burden on their families.  I am in no way suggesting that is anything that was or will be done here and now.  But I don't want to go even a tiny step in that direction---and portraying those with severe autism as non-taxpaying family destroyers---well, I can think of many, many ways to talk about severe autism that are both honest and loving, ways that illustrate what we need as resources and help while also showing why our children are worthy of all the love and respect that all of us, taxpaying or job holding or poetry writing or baseball playing or not deserve.

I think the general public is capable of understanding that it can be very, very hard at times to be a person with or a parent to someone with severe special needs, but that there is also joy, and love, and humanity there. I don't think we have to settle for a portrait of those like Janey that only shows the burden.  I wish RFK Jr. could meet Janey. I wish he could meet all of your girls and women and boys and men like her, and that he would put his passion and influence and power into giving families like ours the help we so need, not because our families are being "destroyed" but because our loved ones with severe autism deserve a life with all the love, dignity and happiness in the world.

Actually writing a blog post...

 I've never gone this long before between blog posts.  The longer I go, the harder it feels to get going, so I thought tonight I'd just write, even though my thoughts aren't that organized.

Why has it been so hard to write?  It's hard to say.  Janey has been herself---which is to say, up and down, here and there, but not really that much different than in the past.  We had a few very, very rough patches with tons and tons of crying and screaming, but also some wonderful patches with lots of happiness.  We've also had times of her being awake for nights in a row,  and other times of lots and lots of sleepiness.  As the years go by, the most consistent thing with Janey is her lack of consistency.  She is very, very cyclical, and although it can be hard to see in the middle of the tougher cycles, it's helpful for us to remember that even the worst times get better after a while.

I think part of what is making it hard to write is that the closer Janey gets to 22, which is when she will no longer be in school, the more I am terrified of the future.  From what I can see from others in our state, it's very hard to get anyone into programs.  We are aiming for a good day program, but even without looking for a residential placement, I hear so often of others getting nothing---nothing at all.  From how Janey does during vacations and even to some extent weekends...well, that will not be good.  

I am not very political, but I have to say the current scene here in the US doesn't seem to be one that cares much about people like Janey.  I worry that the things that make us able to get from day to day will disappear---the social security that allows us to afford what Janey needs, the structures that will at least give us a shot at an adult program for her.  And I fear very much that those younger than Janey will not have a public education like she did.  We have had so many wonderful teachers, therapists, aides...so much love and caring from extraordinary educators.  I despair when I think of the possibility of that not being the case of others like Janey.

And my own ageing---that is scary.  I will be 60 next year.  It seems impossible to believe. I don't mind getting older, but I wake often in the night in terror thinking of life for Janey when Tony and I are gone.  She has her brothers, and I know they will do all they can for her, but I think what scares me most is that she won't understand some day when we are gone.  We lost Tony's brother last month, and although of course we tried to explain this to her, I know she has no understanding of death.  

There are so many times lately when it all just gets to me.  Sometimes I let myself fall into feeling the unfairness of it all---a useless feeling but one I will admit to. Why is Janey autistic?  Why didn't she progress much at all after her horrible regression at three?  Why are things still often so hard with her?  Why does it seem impossible to completely toilet train her, to help her speech get better, to keep her from screaming during the tough spells, to get her to sleep during the awake spells?  What are we doing or not doing?  I feel like I used to be better at staying positive.  

So...maybe this is why I have had such a hard time writing lately...fear, discouragement, tiredness, worry.  

However, through it all, there is luck and there is love.  I am so lucky to have the husband I do, the most wonderful father Janey could have ever had the luck to have.  I am lucky to have the friends I do, including the ones I have made through this blog.  I am lucky to have my amazing sons.  And Janey, I am so lucky to have you as a daughter---my beautiful, mysterious, fascinating, frustrating, amazing daughter.  The fear I have is because you deserve everything.  You deserve a world that values you, that will protect you, that will invest in caring for you, and for all others living lives like yours.  I will work toward that world until my days are through.

"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.

Oxygen masks are hard to put on

 We've all probably been reminded of airplane rules, how they tell adults to put on their own oxygen mask before their child's one.  It's part of a series we get told as autism parents, and I don't think I'm the only one that can get annoyed by them.  The reminders feel like they are saying "You are responsible for your own burnout, your own tiredness.  You need to take time to put yourself first.  That's on you"  And I don't even need to explain to those of you who are living this life the flaw there---how impossible it can be to get even a minute to take care of yourself, how none of us can just say "Okay, today is for ME!  I'll call the handy available affordable babysitter, who will be right over, and I'll go out to the spa and to lunch and to the museum and a hotel overnight and then I'll come home and be a better autism parent, because I did the right thing and took care of myself!"  Ha.  HaHaHa.

I say this because I think you'll all get why over the past 9 or 10 years, I ignored a lot of signs my health was worsening.  I had a few diagnoses already---NASH liver (non-alcoholic liver disease), Sjogren's syndrome (an autoimmune disease that causes dry eyes and mouth and extreme tiredness) and hypothyroidism, along with smoldering diverticulitis.  I figured all of those were more than enough to explain why I was so extremely tired all the time. I assumed they were also why it was becoming increasingly hard to concentrate or multi-task, and even why I had pain in my muscles and in my bones al the time, every minute, always.  When a year or so ago my vitamin D was extremely low, low enough that several doctors said they'd never seen a lower read, I just took more D.  When, over the course of the past 9 years, I had blood test after blood test that showed I had high calcium levels, I didn't investigate and neither did any doctor.  Those tests were never the focus of my blood tests.  Instead, my primary care doctor constantly tried to get me to take cholesterol drugs, which I weren't convinced were safe for my liver.  Finally, I decided to switch doctors.  I was feeling increasingly unheard.

I saw my new doctor, he ordered blood tests, he saw my calcium was once again high, and miracle of miracles---he ordered one more test, a test of what is called Parathyroid Hormone.  My PTH level was sky high.  That was all it took.  He diagnosed me with Primary Hyperparathyroidism.  

For those of you who don't know what that is---in a nutshell, it's when a parathyroid gland (or two or three or four---you have four, located on the back of your thyroid) goes haywire.  It tells your body you don't have enough calcium, when in reality, you have too much calcium.  Your body goes crazy trying to get more calcium, and takes it out of your bones.  The result is the symptoms I'd been having, and more---extreme tiredness, muscle and bone pain, low Vitamin D, confusion---and there are many more. Do a quick Wikipedia search about it and you'll learn a lot.  And PLEASE---the next time you have blood tests, check if your calcium is high, even a little high.  If it is, ask for a PTH test.  Right away.

There is only one cure for hyperparathyroidism---surgery to remove the haywire gland.  I had all kinds of imaging tests to try to locate exactly which gland had gone bad.  They weren't definitive, so I went in for exploratory surgery.  Luckily, the gland was found quickly.  The surgery took about 4 hours, took out the bad gland, I was in the hospital only one night, the main pain afterward was just from having had a breathing tube, and as parathyroid hormone has a half life of only about 4 minutes, by the time I came out of anesthesia, I was cured.

And, incredibly, within days, the pain I had felt non-stop for years and years and years was GONE.  Not just better, but gone.  My confusion was greatly improved.  I felt just...better.  Better like I had thought was no longer something I could feel.

My point here?  Well, it's partly just to educate people about hyperparathyroidism, which is sadly underdiagnosed.  But it's more to say---we as autism parents, sick or not, undiagnosed with some surprise disorder or not, just can't put on the oxygen mask easily.  We are used to being tired.  We put our kids first, not because we are saintly self-sacrificing parents, but because we don't have a choice.  Our kids need us.  They need us 24 hours a day, 7 days a week, 365 days a year.  And if our kids have severe autism, by any name you choose to call it, as Janey does, this will not change, not for our whole lives.  I could have easily gone the rest of my life without the surgery, without the diagnosis, because my life simply didn't leave me the energy, the time or the help we needed to get the diagnosis.

Even to have the surgery, Tony and I had to ask our sons to take time off of work.  They did, willingly, and they took excellent care of Janey.  But that is not something we can do except in emergencies.  If they had not been able to do that, or if I had been a single parent---I don't even know how I could have had the surgery.  

We need a structure in this country to provide REAL help for people caring for those with severe autism.  We need it NOW.  It exists in most countries.  I know that from my hobby of exchanging postcards with those around the world, and from hearing from other parents through this blog.  We need it not just so we parents can get a break, but so we can live.  Literally, live.

Janey did not do very well with my surgery.  The day before the surgery was her last day of school.  Usually, we would have talked to her a lot about this, and had a busy day set up to make up for the lack of school the next day.  But we were pretty distracted.  So, the day of my surgery, she had no school, and Tony and I both were gone from the house---something she is supremely unused to.  She had fun with her brothers, but then the next day, again, Tony was gone getting me home.  When I got home, I had to stay away from her for a few days.  She likes to jump on me with enthusiasm, and my incision made that unsafe.  The incision was also big and scary looking, like someone had tried to cut my throat (it's already a lot better looking now) The surgery was on a Thursday.  By Sunday, Janey was in the worst shape mentally we'd seen in years.  She was screaming non-stop, all day.  She frantically took shower after shower, asked for ride after ride, bit her arm and wailed and was so unhappy we worried she'd broken a tooth or something.  It took me getting up the strength to go for a ride with Tony and her and me finally doing what I should have done from the start---explaining over and over what had happened, telling her my hurty place would get better soon, giving her treats and spending calm time with her--to get her calmed down.  She still is avoiding me when she can, quite bothered by the scar, but much better than that awful Sunday.  We were given a vivid reminder we can't ever take the years of vastly improved behavior and happiness she has for granted.  We were also given a vivid reminder of the challenges of self-care.  Caring for ourselves as parents isn't a zero sum game.  Caring for ourselves often results in less time to care as well for Janey as she needs.

And so---we are into another summer.  I hope it's starting out well for all of you.   Good health to you all, and check your calcium!

The tasks of adulthood and a big surprise possibility

The last few months have felt both uneventful and hectic. The uneventful part is good. Janey has had a very good stretch of happy and easy behavior. She's loving school, enjoying home for the most part and generally being quite a delight. The hectic part---us trying to do what needs to be done for an adult with severe disabilities. We are working on getting legal guardianship for Janey and getting her Social Security income---both things that need to be done when or soon after an adult like Janey in the US turns 18.

Applying for Social Security was surprisingly easy, but that's all that's happened so far---applying. We applied I think last November, and haven't heard a single word since then. We were told it could take until May or so to hear, so we are waiting until then to inquire further, but I certainly hope eventually she is approved. She seems like a pretty straightforward case, but you just never know. We did an application mostly by phone, and did a long questionnaire about her abilities, and she has no income or savings, so we hope we did everything we needed to do and it's just a matter of time.

Guardianship---that's another kettle of fish, to be sure. What an incredibly long and hassle-filled process, which isn't over yet. In Massachusetts, getting guardianship involves getting statements from 3 different professionals---a doctor, a social worker and a psychiatrist. Supposedly the second two get done by the schools, and the first through our health plan. We started with the doctor, in November, and got the paperwork for the schools to do. We had thought there had already been a psych eval. done at the schools, as we were told there would be, but somehow it got lost in the shuffle due to a maternity leave. We eventually got it done, and got the social worker's report, but then realized a couple crucial things were missing. Because Janey takes a psychiatric medication, we needed to have her prescribing psychiatrist sign a form about that, and then there was a question involving whether she was capable of understanding the medication and its potential side effects. That was marked yes, which is certainly not the case.

So, with the pressure of time, as the guardianship papers need to be turned into the court within 6 months of the first signature, we had to get the form done and the question corrected. That involved lots of unanswered calls and waits. We had by that point gotten the help of a free legal service for low income people, but with all the delays, they closed our case. Once we finally got the information we needed, we did get them to reopen it and help us complete the endless forms, and we finally turned in the paper, just in time.

The next step was serving Janey with papers stating we were requesting guardianship of her. This seemed a bit useless to us. Janey doesn't understand anything about the process, and it seemed like someone spending two minutes with her could have told them anything they needed to know. However, we certainly do understand that in getting guardianship of a person, the person is giving up a lot of rights, and the process needs to be complete and thorough. So---we took the papers to serve to the house of my dear friend Maryellen, who has known Janey since birth (she was there when Janey was born!), we did our best to explain things to Janey (we basically told her that we were going to make sure we could always take care of her) and Maryellen handed the papers to Janey, officially serving her (it had to be a non-relative doing this) We videoed the big moment.

Now that the papers have been returned, we actually have a court date, next month. I am crossing my fingers that all goes smoothly and we get guardianship (or actually, Tony gets guardianship---it's recommended that just one parent becomes the guardian) Then there are just reports to be filed at regular intervals after that, etc... It's quite a complex deal.

During the very first phase of all this, when we talked to the developmental pediatrician who did the first form, she suggested we might want to take Janey to a geneticist, since there have been so many advances in genetic testing lately. That sounded like a good idea to us, and I set up the appointment, for which there was quite a wait.

We saw the genetic counselor and the geneticist on Friday. I was not expecting too much information from this visit. I figured by this point, we had covered most bases with Janey, and I had pretty much resigned myself to never getting much in terms of the "whys"---why did Janey regress so suddenly and badly? Why did she have such slow physical development early in life, which isn't usually an autism thing? Why does she have the few other odd things---the lack of periods, the mild scoliosis, the strange eyes rolled up high at times, the occasional severe hand wringing?

To my vast surprise, after a very thorough and well conducted history and physical exam, the two person medical team said they had a strong suspicion that Janey might actually have a genetic disorder---Rett Syndrome.

I had heard of Rett Syndrome. It's always listed as a variant of autism, one that only girls get. But all my reading about it made it sound far more severe than what Janey has. My understanding was that girls with Retts didn't ever walk or talk at all after they regressed, that they had no useful hand function due to hand wringing or other hand movements that never stopped. But the genetic counsellor told me that with the increased availability of genetic testing, it's been realized that there are many forms of Retts, including ones that sound a very lot like Janey. One of those is called the Zappella variant, or the Preserved Speech variant, and girls with that retain some speech and have much more use of their hands.

We agreed to have Janey tested---in fact, to try to get our health plans to cover testing of almost all genes that have been mapped, but that failing, to start with the Retts gene. It will take months to get the results (we haven't even yet gotten the testing kits that come in the mail)

I admit this all has flustered me a good bit. I am not sure why. It wouldn't change anything about Janey. It would perhaps relieve some of the guilt that I imagine you other mothers are familiar with, the feeling that I did something somehow to cause Janey's issues. Rett Syndrome is something that happens at conception. It isn't even passed down by parents. If she has it, her fate, her regression, so much of what she is, was determined the moment she was conceived. I am working, as several friends have advised me, on not trying to analyze why this is feeling like such a shock, a somewhat unwanted shock. But it is.

Of course, we don't know for sure Janey does have Rett Syndrome. If she does, I will go into full research mode, and I will share what I learn with all of you. It sounds like, with the recently discovered variants, that others reading this might also have a girl with Rett Syndrome, without knowing it. And I know I might be getting the facts or terms about it wrong---please forgive me if I am. This is extremely new to me.

The other hugely bizarre thing is that literally DAYS before we learned about the Rett Syndrome possibility, the first ever drug for the syndrome was approved. It's called Daybue. I have no idea if Janey would be a candidate for taking it with a variant, and I've avoided reading too much about it. It would be almost too much to believe that there could be an oral medication that would help Janey's functioning. I can't start thinking about that right now, but as I have so very many times over the years, I wanted to share this journey with all of you---partly, as always, for myself---because it helps to not take these journeys alone.

So---adulthood. Wow. It's been something so far. But at the core of it all is our Janey. She seems to be enjoying life. This past week was vacation week, and several times she brought us her backpack and said "Go on the school bus?" We love her love of school. She has fun with most of the same things she's had fun with for a while---car rides, eating everything and anything Daddy makes, watching Vampirina and Little Einsteins and Fancy Nancy and all the Toy Stories, listening to music, jumping and dancing---just being our (most of the time) joy. Janey, you are turning out to be one fine adult!

Independence when possible

If Janey were able to tell me what she most wants in life, my guess would be it would be increased independence, and that can be heartbreaking to me.  With her intellectual disabilities and severe autism, she will never live independently, she will never be able to leave the house on her own, she will never indeed even be able to be at home alone for even a minute.  The few times she's been able to express thoughts in this area, she has asked me to go inside while she plays outside.  Even that isn't really possible---we live in a busy street in the city.  We sometimes stand just inside the door, to give her a little feeling on being on her own, but that's the most we can do.

So lately, we've been working on ways Janey can be independent in the areas where it IS possible.  We've found a bonus in this---it makes life a lot easier for Tony and me, and gives us a bit more time to ourselves.  It's a true win-win.

We had a breakthrough a few months ago with the shower.  As you might recall, Janey adores showers.  She will happily take four or five a day.  Once she hopefully starts getting social security, I think most of the money will go to our water bill!  But we have gotten weary of the shower routine, which we somehow assumed we always had to do most of the work for.  Then she surprised us.  One of the those nights when we simply couldn't keep our eyes open any longer, after she had been awake night after night, she got tired of waiting for us.  We awoke to find her soaking wet, having given herself a shower.  We rushed back to turn off the water, but otherwise, all was mostly fine.  

We had no idea Janey knew how to turn on the shower.  It's a little complicated, like everything else in our old house.  And the next day, when she asked for a shower, we told her to start one herself, to try to see how she did it.  Well, she just stood there.  We decided to wait it out, and finally, after 38 minutes (we kept track), she got into the shower and reached up and turned on the water.

So---the jig was up.  Now, when she asks for a shower, we tell her "Go ahead!  Take a shower!"  And she does.  It sometimes takes a very long time for her to do all the steps, but she's happy, going at her own pace and working toward what she wants.  I still wash her hair when it needs washing (maybe someday we can figure that one out, but not yet!) and we block access to the shower now at night, to avoid water being left on for hours and overflowing (turning OFF the shower isn't in her toolkit yet), but during the day, if she wants five showers, she gets them, and we get a little break.  We check on her a lot, we make sure all is well, but mostly, she does it on her own.

Another breakthrough, one that took Tony and me stupidly long to figure out, was TV access.  We have an Amazon Fire system to access the streaming services we have, and even for us, it's not the easiest thing to figure out.  For Janey, despite us trying very hard for years to teach her, it seemed impossible for her to learn.  So when she wanted to watch a show, she'd come to us with the remote and say "I need help!"  Which we were happy to do---for the first 5 or 10 times an hour.  The problem is that she doesn't generally just watch a show or movie all the way through.  She like the intros or certain scenes, something she can do easily on her phone and tablet, but something beyond her on the "big TV" using the remote.  

Finally, we realized that all the streaming services can be accessed by computer.  Janey uses a mouse with ease.  I'm not sure why she can use a mouse but not a remote, but I think it has to do with the visual cue of the caret on the screen.  Our TV is set up so it can also be a computer monitor, with the push of a button.  So---we "lost" the Fire remote.  It stays lost at any time Janey is home.  If she wants a show, we tell her "You know how to do it!" and she does.  She switches easily between services and YouTube and rewinds and repeats to her heart's content.  It was a rough few days at first, with many hours of "I need help!", but when she realized the remote was "lost" for good, she adjusted.

This is an example of something that we should have figured out years ago, and you might wonder why we didn't.  I think part of it is we just get tired.  It can feel easier in the moment to once again put on a show for her, to say "Okay, one last time!" when we know it's not one last time, than to take the time to figure out how to change things up.  I have a feeling most of you caring for someone like Janey get that.  Constant tiredness, constant vigilance---those are not friends of innovation.

The third area we've made some progress with is Janey being awake at night.  No progress in keeping her from BEING awake at night---we've realized that's probably not going to happen.  Janey goes in cycles.  For a few weeks, she sleeps more than most people---sometimes going to sleep soon after coming home from school and sleeping all night.  Then there might be a few days of near typical sleep.  Then....the few weeks of very, very little sleep, where she can be up nights in a row with NO sleep, or sleep only a few hours a night.  

These times are currently the hardest part of being Janey's parents.  It's no coincidence that being prevented from sleeping, being woken all night, is sometimes used for torture.  When we are up all night with Janey, we simply don't function at all close to normally during the day.  We are in a constant haze.  So, figuring out the nights is a priority.

We are lucky in a few things.  Janey is not an eloper.  She doesn't try to leave the house.  Over the years, we've childproofed, or Janey-proofed, so that she can't get at things that aren't safe for her.  But still, when she didn't sleep, we didn't sleep.  Part of that was just habit---even though she now was pretty safe at night awake on her own, we couldn't relax.  And partly, it was because if she ran into something she wanted we couldn't help with, she'd wake us up.

This problem isn't solved, but it's better.  We have started setting things up for Janey to access in the night.  Her phones and tablets are always accessible and charged, and we finally figured out (thanks to Freddy, our in house IT guy) how to take the passwords off them safely, so she doesn't need to wake up to constantly reinput the passwords.  We started leaving food Janey likes front and center in the fridge, leftovers for her to find.  She can get herself a midnight snack if she wants.  And now, we can better doze as she's awake.  Not totally---she can be loud, and she still wakes us fairly regularly, but our sleep (and by our sleep I'm doing a disserve not to say Tony's sleep, as he has always done the lion's share of the night shift) is more than it used to be.

It's striking me that it's fairly little things like this that make life easier---finding small ways to let Janey be the adult she is, and let us be the tired late middle aged people we are, letting us co-exist in a way that works a bit better for all of us.  There's areas that can't be changed---Janey is not going to learn how to drive so she can take herself for the car rides she so craves---but at times, it feels like we are making progress in figuring out, after 18 years, this unique lifestyle.