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.