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.

Cabin fever for a year

 I woke up this morning and thought "Great---another day".  That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough.  And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.

Janey hasn't been happy.  School is complicated and off and on, but hopefully she'll be going more regularly soon.  However, this past week was vacation week.  Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?"  In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible.  Janey is bored.  She has had a life that's been incredibly limited for the past year.  We all have, but she has far less resources to keep herself happy and entertained.  She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row.  We try, of course.  But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger. 

The list of what Janey likes to do at home is very, very limited.  She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed.  Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help. 

Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her.  We are supposed to stay there for about 30 seconds, then she has us get up.  About 5 minutes later, she gets up herself and it all gets repeated.  If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse.  If we refuse all day, it lasts all day.  Needless to say, we give in after a while.  It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual.  

Car rides---her favorite thing on earth.  Every morning, from the second she wakes up, she asks for a car ride.  She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on".  We explain, as patiently as possible, why a car ride can't happen that very second.  Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted.  No reason works, of course.  If she wants a car ride, she wants a car ride.  The car rides are rides to nowhere, rides around routes Tony has figured out over the years.  They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!"  In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.

Eating---Janey loves to eat.  Luckily, Tony loves to cook, and he's wonderful with her eating.  She eats a great variety of foods, mostly healthy. But her greatest love is salami.  She eats salami completely without a stop button.  We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey.  But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.

And TV watching.  Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4.  We know them both by heart.  We are so tired of them we can barely take it.  Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less.  If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.

A pretty good movie, but boy, are we sick of it

We try hard to make Janey's life more interesting.  We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor.  We can, with much trial, get her to do these things for maybe two or three minutes.  Then she is done, and nothing on earth can make her do them longer.  

In normal times, we are able to mix things up.  There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic.  But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her.  I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.

The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter.  But the truth is---we are not doing well.  We are really not doing well.  We are a mixture of bored and frustrated and tired and concerned and overwhelmed.  This feels endless, and at times, impossible.

Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going.  People doing whatever needs to be done to get this mess under control will be a help.  But I feel for the long term consequences.  I fear for all the Janeys in the world.  I fear that it will take many years to recover from this horrible year.  I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't.  I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.

On admitting it's ME who is overwhelmed and frustrated...

We are at Friday of spring vacation week.  Tony is taking today off, which is a huge, huge, HUGE relief.  It's been a long week.  Mostly for me, more than Janey, and that is what I'm thinking about.

Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it.  I think you were right.  Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script.  She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness.  With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.

Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days.  This is how it went....First, she woke up about six.  I snuggled with her a bit, we had some breakfast, she watched a little bit of TV.  Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us.  We did the routine of getting dressed for the day, and walked to the store.  Janey loves this.  I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home.  Then she ate the chips outside while I had my coffee.  

Next, we went back inside for a little more videos time.  Then, Janey asked for a shower.  I set it up and she had one---washing her hair or not depending on if she needed it.  I let her take as long a shower as she felt like.  We got dressed again, a little more videos and then Janey asked for a car ride.  I suggested a place, which didn't really matter, as she wanted simply to be in the car.  We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.  

The huge hug when Daddy gets home

When we got home, Janey screamed because the car ride was over.  That's where the routine still was routine, but not a very fun one.  For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy.  As early as I could do it without it being too long, we went outside to wait for Daddy.  When he got home, Janey acted like she was seeing a returning soldier after many long years.  The smiles and hugs were incredible.  Then they went for the kind of car ride she really likes, long and without destination.

By last night, I was in a mood and a half, and I realized something.  As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do.  And I was bored, frustrated, hurt, tired.  

The ride yesterday was the last straw.  For the ride, I said we could go to Panda Express.  None of us but Janey like this fast food Chinese food, but she loves it.  However, I didn't realize that she had a routine in mind.  There was a line when we got there, as it was lunchtime.  I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people.  I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go.  I had barely had a bite.  She grabbed the tray and wanted to throw it out.  She was rapidly becoming frantic and hysterical.  I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.

Then, Janey wanted to go in the Chipotle.  I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead.  Then, they came over to see us at the Chipotle.  The fact that the boys are away at college and Tony was at work didn't matter.  We were supposed to go in the Chipotle and see them.  I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.

When Tony got home, I started ranting.  I had done everything I could for four days to make it a week that would work for Janey.  Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it.  I was tired of trying so hard to keep her happy.  I was tired of dealing day and night with screaming.  I was tired of....well, all of it.  

And that's the thing of it.  All of us autism mothers and fathers are human beings.  We do our solid best.  But sometimes, it gets to us.  And that is where it gets hard.  Because what do I do?  There is no break from this.  There is no end to it.  There is no day that Janey's needs won't be overwhelming.  This is my life.

Last week I talked about the lack of programs or activities for those like Janey, with high needs autism.  The truth is, Janey doesn't much want outside activities, I don't think.  I do.  I want the break they would give me.  But the few activities that do exist---classes and therapies and so on---require I be there with her.  And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway.  It's me that needs variety, and a break, not Janey.  

I got over my rant last night.  I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today.  But I keep being struck by that one thought---parents of kids like Janey are people too.  Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.

Back from the end of my rope

Last week was school vacation week here in New England.  It couldn't have come at a worse time.  Janey had been in a mood for a few days when it started.  She was on edge, screaming much of the time, not happy at all.  Then, the first weekend of vacation, it got extremely cold, the coldest it's been in Boston since 1957.  It wasn't the kind of weather we could get Janey outside in.  She was displeased.  She spent a few days switching hysterically from one video to another, screaming when we didn't immediately understand her, biting her arm and generally being very, very unhappy.

I had planned for quite a while to get away for a few days during the vacation week.  Tony had taken the week off work, as it's been a traditionally very hard week for years.  I was planning to go up to Maine and visit my parents on Wednesday, and then Friday have a long-awaited special treat getaway weekend at an inn as a early birthday gift from a dear friend (thank you, Julie!)  I was (and am) looking down the barrel of, let's just say, a milestone birthday, which would have been stressing me without any tough Janey times.  And I kept thinking---I can't go.  I can't leave Janey here with Tony alone.  But on the other hand, I kept thinking---I have to go.  I NEED to go.  I felt at the end of my rope, hanging on by a single thread.  Each time Janey screamed, I tensed and felt waves of stress and despair wash over me.  I felt like I couldn't take one more second.  But I kept telling myself "I can't go.  I can't leave Tony to deal with this"  Tony, who I will right now nominate for husband and father of the year, kept telling me I should go, that he would be okay, that he'd manage somehow.  It's hard to even explain my state of mind as I tried to decide.  It wasn't sane.  But finally, after getting Tony to promise that if it was too hard, he'd call and I'd come back, I did go.

And Janey was fine.  Not perfect, but fine.  She often seems to do a little better when it's just one of us with her, because all the attention is focused on her, we think.  Tony took her for lots of rides, changed her videos as demanded, and slept when she slept.

Janey views the sunrise

It took me a little while to calm down once I left.  I took a bus to Portland to meet my parents, and the bus ride helped.  I sat and decompressed, and played word games.  By the time I reached their house, I was much, much better, and by the next day, I felt great (although I woke with a horrible headache, probably from all the days of stress)  It was great to have a few days with my parents, and then a few days at an amazing inn with my friend and her fiancee.

Crescent Beach, Cape Elizabeth, Maine

Tony and Janey came up to the inn on Saturday night.  Tony got a chance to relax hanging out with the friends, and I took care of Janey, and by the time she got there, I was looking forward to seeing her very much.  I felt able to cope again, to think of ways to keep her distracted and happy.  We had several showers in the room's huge shower, baths in the big bathtub, we walked to the empty beach at sunrise, we spent time at the bonfire outside in the evening.  We had fun, because I was able to relax enough to have fun with her.

I learned a lesson, one I've tried to learn before, but I think this time it really will stick.  Sometimes, I really do need to take care of myself to be able to care for Janey.  I don't need to be a martyr to care for Janey, to love her.  We don't have a lot of respite, but Tony and I can switch off at times and allow the other party to get a breath.  And Janey will manage.  The toughest times don't last forever.  They come and go.  And I am much better able to to be a creative, patient mother if I am not at the edge of the cliff.

Now, to face tomorrow's birthday and the start of being AARP eligible.....

Janey's burst appendix story----Part Five

I very much hope this story doesn't get more than a few parts longer.  Yesterday, that was looking more likely.  Today, not so much.

Janey got moved back down to the regular ward yesterday afternoon.  We were very hopeful when that happened.  Her surgeon thought her belly felt much better, and had digestive sounds, and although she had originally planned on getting a CAT scan, she cancelled it.  There was also a lot of talk of getting her a PIC line for nutrition, but with the belly seeming better, it was decided to give her a day to try to start eating, and she was allowed clear fluids.

However, she didn't have much interest in eating (or drinking, really).  She did have some ginger ale and a bit of lemon ice, but mostly she pushed away anything we tried to give her.  She also seemed to be in more pain, although she hasn't had a fever in almost two days now.  She was restless.  The room we are in has two beds, and she was determined to move to the one she wasn't on.  So determined that she knocked out an IV trying to move once and then loosened one another time, sending out blood.  She also is still having diarrhea, lots of it.

So this morning, her surgeon decided to order the CAT scan after all, and she is there now getting it (with Daddy)  She thinks she has an abscess forming, and that would need to get a drain.  They also are going to finally get the PIC line, as Janey is getting thinner and thinner.  She is looking bony.  She hasn't had real food for 11 days now, which is just way too long.

It's hard to believe all this is still going on, but in other ways, it feels like it's been going on for a lifetime.  I feel like I can barely remember life outside this hospital, at times.

Last night, Tony slept here where I slept in the extra bed.  Usually, I have him sleep at home or in another room, because he is a heavy sleeper and I am not, and we want to hear what is going on.  That was the plan yesterday, until I just felt I'd hit some kind of limit.  It wasn't tiredness---I've almost gotten used to that.  It was a feeling that I could not longer make decisions.  I could no longer tell if Janey was having an issue I should call the nurse about, if she were fine or not fine.  I think I'd had so many days of total vigilance that whatever brain system handles that was no longer working.  So Tony took over that, and I went and ate some dinner and sat in the parent room and read.  It helped.

My mind is still too much of a whirl at this point to be sure, but I think I know what I need to do when this is over.  I need to reach out to those in medicine that deal with autism.  I need, in some way, to educate those non-autism specialists what autism looks like, and crucially, how to proceed when dealing with a child that might be critically ill but doesn't show it in typical ways.  I talked yesterday to a woman here who is kind of an autism liason with the hospital, and she mentioned I might want to try to join the parent board of the hospital, as she thinks they don't have a special needs parent.  I am far from a joiner, but that might be something I have to try.

So---we'll be here for a while yet.  Yesterday there was talk of us getting home by Monday, which is Freddy's graduation day.  Today that talk seems to be gone.  Of course, that could change again tomorrow.  I've figured that much out there---it's an hour by hour thing.  You can't really make plans, because Janey's body is the one making the plans.  I hope it's planning for a full recovery in the fairly not so long future.

We simply choose to forget

I've been trying for the last few days in my head to write a year end post that was cheerful, that summed up Janey's progress for the year, that sent out a message of hope and looking forward.  I can't.

The song "Memories" keeps going through my head unbidden, with the line "What's too painful to remember, we simply choose to forget".  That's what I wanted to do with last day of the year post, chose to forget what is painful to remember.  But Janey has been screaming for two days straight, just barely interrupted now and then for a few moments sleep.  I am exhausted, done for.  I have no idea what is wrong, and it's most likely it's just the demons that haunt Janey on a regular basis.  This effect is enhanced by the irregular schedule of the holidays.  Tony was home last week, but he had to go back to work yesterday.  Janey didn't take that well.  He's at work today again.  He'll be home tomorrow for New Years, which almost makes things worse, as she will get used to him home and then---work again.  She is supposed to go back to school on Friday, but they are predicting a big snowstorm, and that probably won't happen.  I feel at the end of my rope, at the end of my resources.

Yesterday I did a brief ride to take Freddy to a friend's house.  Just being out of the house for that little time felt like a treat.  I started thinking about how my world has gotten very small.  I love the few places I can take Janey.  We had a couple very nice evenings at friend's houses over the vacation.  But those are rare.  Mostly, on a regular day, there is no place to go with Janey.  The winter is even worse than the summer, because with the 10 degree weather outside, even when it's not snowing, there isn't the backyard or park option.  I look at Facebook, at friends' kids, going to outdoor events, playing sports and having sleepovers and going to parties and taking road trips, and at times, my jealousy overcomes me.  That's not a kind thing to admit.  I had those days, when the boys were young, but now, my life feels very, very small.  I sometimes fantasize when Janey is screaming the night away about the years long ago when the world was open.  I think for some reason about one night, when I lived in Orono, Maine, after finishing college, while my boyfriend then was in graduate school.  I had written a letter, and I walked to the end of our short street to mail it.  The sun was setting, and I had a sudden moment of elation, thinking how my whole life was in front of me, how I could go anywhere and do anything and be anyone.  I didn't often think like that, even back then, but that moment somehow has stayed fresh.  Now, I see only a very narrow path, a very closed world.  I will care for Janey until I die.  These might be the easiest years, with her in school and afterschool. Even that might be ending soon.  The school might no longer be able to handle her.  They might want to move her, and the one haven I currently have, with a place I know and love, with people I trust to love Janey, might no longer be able to care for her.  I am feeling, frankly, overwhelmed and scared.

And so this isn't a cheerful post.  It's an honest post.  I want very much to go into the "Memories" mode, to tell you all the good of 2013, to delight in my girl.  If I can't do that, I want to go into "good autism mother" mode, and put myself aside and stop my complaining and concentrate 100% on Janey, whether she is screaming or crying or not sleeping or whatever, to not have these selfish feelings of isolation and depression.  And all those failing, I just want to somehow feel hope that it will get better.  That hope isn't strong right now.  Tomorrow, I will try hard to start the year on a better note.  Until then, I'll just close with my most heartfelt thanks to all of you, for listening.

Counterintuitive Wins Again

Janey's sleep started to be more and more of an issue around the beginning of August this year.  What was an occasional night waking turned into an every night thing, with her staying awake for hours at a time.  From about the middle of August until around a week ago, I think we had only one night with full sleep.  It was becoming harder and harder to take.  We tried most everything we could think of, including a new medication, melatonin and any behavior approach we could find.  Except one, and that is the one that finally might have worked.

Tony mostly deals with Janey at night.  This is because medical issues make me very tired and also because he is better at getting back to sleep after being woken up.  We have a rule between the two of us, though, that if he or I get overwhelmed, we just tell each other and switch places.  It's necessary, with a high need child like Janey.  However, Tony still does the brunt of the night work, and I greatly appreciate that.  About a week ago, as I slept, Janey once again woke up, and in the morning, Tony told me he had done something new.  He completely embraced her being awake.  He didn't tell her to go back to sleep, he didn't try to keep things quiet, he didn't try to make deals with her, he didn't get upset, he didn't show a trace of annoyance.  He simply accepted she was awake, and had fun with her.  He played the recorder and they sang, they watched some YouTube together, they drew (which to Janey means making her J's on paper), they laughed together---they had a great time.  And after about two hours, Janey fell asleep and stayed asleep, the rest of the night.  And since then, for the last week, Janey has slept all night.  She even slept in on Sunday morning---we all slept until about 10.  It was incredible.  A couple days, she napped, and even then, slept at night.  Every night, we are astonished that another night has gone so well.

Now, of course, as I'm writing this, I'm knocking on wood.  And I in no way think the sleep problem is solved.  Janey is cyclical, and it just could be that the bad sleeping time had reached a natural end.  But it also could be that Janey needed to see that night or day, we were there for her.  Maybe she kept waking up hoping for a time like Tony and she had.  I don't think Janey gets the difference between day and night much---not in that she sleeps all day, but she doesn't understand why we aren't as alert at night when she does wake up.  Maybe now, if she wakes for a minute, she isn't feeling she has to test to see if we will still be happy to see her.

So, so often, Janey has shown us that the regular parenting truths don't work with her.  They don't work because she is autistic, and doesn't have the same motivations and reactions to how people act as most kids do, and they also don't work because she is intellectually disabled.  She doesn't have the ability to reason out things like most kids do.  I don't think she can think out "I really shouldn't bother them at night.  They need sleep.  I need to let them sleep.  They won't be happy if I wake them up"  Her mind doesn't do that, because of the autism and the retardation.  I believe she thinks on a more basic level, a more self-centered level, because that is what she is able to do.  I have to believe she's doing the best she can.  By trying to deal with parenting issues the way that would work best for most children, we are not honoring who she is.  It is something that only now I think I'm truly understanding.

So, at least for now, if Janey awakes in the night, we will do our best to make sure she knows we always are happy to see her, day or night, and we will hope that it keeps working.  My fingers are crossed.

The day after not sleeping

The day after?  A day that feels like a lost day.  Janey wakes at 7 am, ready to go.  She is a little grouchy, but not severely.  She has a cheery ride to school, listening to her favorite song lately, The Battle Hymn of the Republic, at least until we get to a version she doesn't like, which causes her to scream like she's in agony.  We are almost at school anyway, thankfully.  I warn her teachers about her lack of sleep, in case she gets sleepy, but I know she probably won't.  I go home, and through sheer force make myself do the minimum I need to do---some laundry, some dishes, some packing things to mail.  I wouldn't even do those, but the boys have activities all the time that require certain clothes, and when I slack off, they have desperate mornings looking for what they need.  I try to keep my nap at a minimum.  Napping lately makes me depressed.  When I wake up, I feel disoriented, like someone has stolen time from me.  Tony picks up Janey and brings her home.  She is in a bad mood.  She eats a lot, as she has been lately, but as of right now, 7 pm, doesn't seem sleepy.  I don't know how that is possible.  She was up from 11 pm to 3 am.  My mind is a hazy cloud.

When we have days and nights like this, the task of raising Janey feels almost impossible.  It feels like it will defeat us.  I have to make myself keep the good times in mind, the times that Janey is happy and fun to be with and although vastly different than most girls her age, not necessarily tougher to be a parent to than any other child.  Those times are great.  But when we are sleep deprived and Janey is crying or hysterical or manic, those times fade in our mind and all we can see the present and the future, the present so tough we can barely go on, the future looking far from bright.

I don't like to be discouraging here.  I know people read this that are just starting their journey of autism parenting.  My story, our story, is not everyone's story.  Sometimes I am tempted to leave out days like this in telling our story, but that is not honest. I don't think it's fair to Janey, or to the other families out there, to pretend or to be a Pollyanna.  Hopefully, the truth tomorrow and in many days in the future will make for more upbeat reading.

Mother's Day, autism parenting style

For some reason, I was dreading Mother's Day this year.  Maybe it's because it seems in its core to me a Hallmark holiday, a day to feel certain acceptable feelings and to celebrate in a fake way, to reward certain kinds of perfect mothers for their correct form of mothering.  I didn't sleep well last night, thinking about a multitude of things including that.

Then, this morning, for a little bit, I had a classic Mother's Day happy interlude.  For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern!  I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin.  I never expected to own my very own Brooklyn Lantern, good for 100,000 hours!  So we were all laughing and having a wonderful time.  You can almost guess what came next...

Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door.  All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar.  I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen.  On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace.  And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun.  During that, she ran to our bed and got tomato sauce also all over all the bedding.

And that is Mother's Day, autism style.  Autism never, ever, ever, ever takes a break.  You can't let your guard down, not for 10 seconds.  You can't relax and just enjoy, assuming all is fine.  Every single moment has to involve autism.  Every damn minute.

I don't mean to be so negative.  It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband.  But I am tireder than ever.  It's never going to end.  I'm an autism mother.  I will always be an autism mother.  That is my life.  It's a crazy life.  It has great moments.  It has its rewards.  And I know that's the case for any kind of mothering.  Mothering isn't easy.  No-one said it was.  I have my own specific set of challenges, but I also have my own specific set of rewards.  But just for that two minutes, couldn't Janey not have spilled that sauce?

Hitting A Wall

Yesterday, I hit a mental wall.  I took Janey to school, came home, did the usual bit---housework, on-line work, packing things, etc.  It got back to be about 2 in the afternoon, and I started thinking about picking up Janey at school.  It was rainy/snowy and messy out.  I was bone tired.  Most of all, I was thinking about the day before, with the CVS screaming incident and Janey going quite frankly insane in the car.  And I felt a feeling that I've felt a few times before with being her mother.  I was hitting the wall.  I could not picture going out to drive in the slush and dark, picking her up and not knowing if it was going to be another ride through Hades.  I felt like I just literally could barely move.  I sat there, feeling shaky and dizzy.  And then I called Tony, because I am a very lucky wife.  I told him how I felt, and thankfully, his work is a little flexible, although always intense.  He said he could come home an hour early to get the car and go get Janey, if the next day he could go into work 2 hours early, and I said fine.  Then I collapsed into bed, and just lay there, trying to work up the energy to keep the day going.

I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation.  That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler.  I am closer to 50 than 40.  Most days, I push through it, because that's what all mothers do.  You don't really have a choice.  And it's your responsibility.  I chose to have Janey, and she is my child to take care of.  But some days, I hit that wall.  I wonder if I can do it.  It's a useless wonder.  I am going to do it, whether I can or not.

But I think about what used to happen, in the past.  In the bad old days, which I in no way want to go back to.  But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people.  Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time.  I would do anything, including give up my own life, to have Janey not live a life like that.  I am eternally glad we live today and not then.  But I do think, like many things, the pendulum has swung in the totally opposite direction.  Now, so so many parents are routinely doing what was previously considered not possible.  They are caring for disabled children at home, and in many cases, they are getting almost no help doing so.  I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program.  But I know far from everyone has that.  And even with that, I am exhausted.  Tony is exhausted.  The boys are exhausted.  We can never take our eyes off Janey.  Never.  We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down.  We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat.  And we are all tired.  Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.

I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families.  Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging.  And mental health care absolutely needs to be as available as physical health care.  No parent should have to beg to have someone help them handle their child when they are in crisis.

For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again.  There's no getting around that, and it's scary.

My autism resolutions for 2013

I am not big on making New Years resolutions.  I don't ever like to delude myself, so I don't like to make ones I know I won't keep.  That's just a setup for feeling awful about yourself, I think.  But I've had some thoughts about what I want to do in 2013 in regards to Janey, and in regards to autism in general.  Four ideas, to be exact....

1.  Delight in Janey whenever possible.  There is so much hard about raising Janey, so much that is tiring and overwhelming.  But there is also a lot that is wonderful.  I am lucky that way.  I am going to try very hard to delight in her, when the opportunity presents itself.  I'm going to enjoy her singing, her amazing smile, her delight in little things, her eccentricities, the rare moments her talking comes through, the multiple moments that she uses the speech she has to get her point across.  I'm going to enjoy dressing her up, and giving her foods she loves, no matter how odd, and showing her off.  I'm going to sit more with her watching her favorite shows and laughing along with her to them.  I'm going to find more music she likes and listen to it with her.  I'm going to read her or tell her the kind of reading she enjoys---poems and fairy tales and rhyming books.  I'm going to let myself just plain have fun with her.

2.  Be easier on myself when the autism parenting gets tough.  Somewhere along the line I got the message in life that you must always carry on, keep going no matter what, don't allow yourself to wallow or admit being overwhelmed.  I don't think that's serving me any more.  If Janey doesn't sleep all night, and I have to sleep most of the next day, I'm not going to spend the day cursing myself and trying to stay awake and get things done.  I'm going to admit to myself that Janey is one tough kid.  She's a kid that overwhelms people like her doctor in just a 10 minute visit.  She's a kid that very few people, without the training in fire Tony and I have had, could handle at all full time, without breaks, without help.  She's a delight often, yes, but she's very, very autistic.  She's a toddler in a 8 year old body.  She require constant supervision.  If I need to rest and spend a day doing nothing more productive than playing Scrabble and reading, I am going to tell myself that the rest of the time, I work a job that respite workers get paid good money to work, and I deserve a day off once in a while.

3  Speak up about autism issues more.  I don't know how often I bite my tongue when confronted with someone advocating the latest "cure", when someone suggests I should find a babysitter so I can "get out more", when someone says that if I really tried, Janey could sit nicely at a table, use the toilet consistently, when people tell me how special diets, intensive ABA programs, Floortime all day long, getting a dog, going to Mongolia to ride horses, swimming with dolphins, etc, might be just what Janey needs.  I admit not everyone has told me those things personally, but they are all out there in the world of "autism cures".  Often, I just smile or say thank you.  I don't step in. I don't comment on Facebook conversations that I see that are pretty much attacking other autism parents for not trying this or that.  I keep the peace.  I feel a little guilty about this. I dare say I know more about autism than someone who once read an interesting Reader's Digest article about it, and I should not be afraid to speak up.  If it's hard for me to do, I can think about my friends with autistic kids, especially those just starting out on the good ol' Holland trip, and speak up for them.

4.  Treasure my fellow autism parent friends.  I thought a lot about the past year last night.  I thought how few people get my life, about how I have noticed that after spending time with our family when Janey is with us, often the invitations to spend time together don't happen again, how I always have my guard up when people are around Janey, how I always watch what I say, how she acts, how I'm always prepared to flee if she gets difficult.  How it's extremely isolating being her mother.  And then I thought about the people I know get it.  I thought especially about the first friend I made through this blog---that's you, Michelle!---and although we haven't met in person yet, how the few times I've talked to her by phone and the emails we've shared and the Facebook statuses we can read from someone who really, really does it have kept me going on many a tough day.  I hope to become real friends with anyone out there who reads this and can relate to it.  We have to be there for each other.  I realize more every day how important that is.

With that, I'll start 2013 with optimism and a smile, and with love to everyone sharing this journey.

In a circle

Janey had her year-end kindergarten program today. She will be going to 1st grade in the fall, and this summer, she will go to a summer program for five weeks. I am feeling good about 1st grade---she will have great teachers, as she did this year, and I think (hope) it will be a smooth transition. I am not as sure about the summer program. The summer program here has a terrible reputation, but supposedly it's been completely overhauled. I will see what I think. It scares me to death to have Janey going to a school she's never been to (the summer program is held at a different school across town from her school) with teachers she doesn't know and I don't know. I am not sure exactly what I'm scared of. Everything. Having a child who can't talk in a meaningful way going off all day to a place you don't know about is very, very, very scary. I will drive her, I will see how things look, I will stay around at first, but I am still scared.

Janey had a good year in some ways. She was happy much more of the time than in previous years. She seemed to learn classroom routines, and she seemed to mature. Seeing her on stage at the program today, although her ABA therapist was right there with her holding her hands and keeping her in place, she was smiling and seemed more engaged. She did yell out with her fairly new autistic sounding yell that seems like a talking substitute a few times, but overall, she looked good.

In other ways, she made little progress. This is not the fault of the school, or her teachers, or I think me, or certainly not her fault. She just has a very hard time learning. Or if she is learning, she keeps it inside. I would say her talking is no better than, and probably worse in some ways than a few years ago. It's mostly single words, except for the delayed echolalia. She still can't answer Yes or No to questions. I think she understands us a bit more, and follows directions a bit better, but it's still very, very slow progress.

Tonight felt like a throw-back to the bad old days. She is screaming and crying non-stop. Maybe she understands on some level that her kindergarten days are almost over. Maybe something else is bothering her, that she can't tell her about. As I write, she is on my bed, screaming "Don't worry! I'll get you out!"---one of her Angelina Ballerina phrases, and then saying "Baba! Baba" for bottle (yes, she still drinks chocolate milk in a bottle. She can use a cup as well as any 6 year old can, but once a day or so, if a bottle makes her happy, she will have a bottle. Not that anyone said anything...) On nights like this, it's easy to feel overwhelmed, discouraged, like we are treading water and will drown some day. I hope not.

I don't know how you do it

"I don't know how you do it" is something I hear fairly often. It doesn't bother me, anymore anyway. I know it's something people say when they don't know what to say---it's meant as a compliment. I used to always think to myself "What choice do I really have?" but lately I've come to think of it, in my mind anyway, as a question---maybe not one that the person actually consciously wants answered, but a question to themselves---"Could I do it? Could I handle it?" Today I thought of an answer. The answer is "It's both harder and easier than what you would think".

Let's take the easier first. It's easier, in short, because you get to get used to it gradually. If I had no time to work up to it, if someone said to me "I'm about to give you a 6 year old daughter. She's going to be autistic. She will also be retarded. She won't be able to talk much, she will cry a lot, she will have extreme trouble with learning anything academic. She will need constant supervision, because she will be into everything and constantly in danger of hurting herself someone. You'll have her for life"---well, I would probably be eying the nearest high bridge. But I have had a while to get used to it, and I've learned that much of it really isn't that bad. When Janey is happy, when we can figure out what she wants and are able to give it to her, the autism and retardation matter very little. The retardation, maybe at this point not at all, to be honest. It makes little difference in the scheme of things if a 6 year old knows her letters, her numbers, if she can talk well, if she is understanding complex ideas. In the future, it will limit her, but right now, she is who she is, and just the fact she doesn't seem to learn well in some areas doesn't much bother me---most of the time. And the autism, at least parts of it, are not that bad either. The social parts are just her. She isn't going to say goodbye or hello readily, she isn't going to make great eye contact all the time, she likes the same videos over and over---I can handle those things. And in many ways, she's a delight, when she is happy. She is beautiful and funny and loving much of the time. She brings us a lot of joy, often. It's not like our lives are ruined by her (at least most days we don't feel that way) She is who she is, and that's the part that is easier.

But it's harder than you would think, too. What is harder than people picture is the endlessness of it. People get tired after taking care of her for an hour or two. And then they get to pass her along. They get a break from her demands, her tears, her confusing requests (things like handing me a bowl and saying "BOWL" a hundred times to try to get me to put some unknown thing in it), her constant quest to get into the fridge and take things out and toss them around, or to throw all her DVDs on the floor, or to open her diapers and make a mess, or to try to escape, or to do any of the things she does. But we don't get a break, except for school (which we are glad to get, let me tell you). Not ever. She is our responsibility around the clock. Imagine when your child was at their worst terrible twos---no impulse control, prone to sudden tantrums, etc. Then imagine that lasted...forever. And that your child was too hard for anyone to watch outside the family---that they never got invited to other people's houses, not because the other people are mean or don't like her, but because they are scared---they don't think they could handle her, and they might be right. That is the part that is harder than anyone can picture unless they have had a child like Janey.

But still, there are people that I would ask the How Do You Do It question to. People with medically fragile children, people who know they could lose their child, people who are single parents with an autistic child, people who have a child like Janey but not a school that they can trust. And they would probably say to me what I am saying to others---it's both easier and harder than you think.

Crying Day

Janey is having one of her famous cry all day days. We don't know why. We've tried all our tricks---feeding her a lot, giving her a bath, me just holding her, etc. It doesn't help that I've been sick for days, and at one point when I was holding her and she was starting to calm down, I started coughing my head off and then throwing up. So that didn't exactly work. Tony has taken her now in the car to pick up Freddy from a party he is at. We are giving a friend of his a ride home, and I guess the friend will get a baptism in fire in autism education. It's an awful helpless feeling when she get like this, for her I am sure and for us. She might be getting sick like I am, but she has no way of telling us that. It's one of those days I don't feel particularly equal to this challenge. I just want to rest and get better, but I can't. William was trying to complete an important application for a summer program, and he could barely hear himself think. It's one of those days I hate all those stupid saying like God doesn't give you more than you can handle. If God handed this out, I think He might want to rethink His method of judging what people can handle. Or the Holland story---if I ever book a passage to France or England or Italy, I better end up there and not in Holland. Holland might be fine, but at this point, I need a vacation and it better be to where I want it to be (if you don't know the Holland story, look up Welcome to Holland anyplace on the internet and you will find the sappy tale) I get feeling guilty, like I don't want Janey to be who she is. But that's not it. I don't think anyone wants to be sad and voiceless. I want her to have a fair shot at life. I want her to be able to tell me why she's sad, and let me try to fix it. And I want the rest of us to be able to live a life where we are not on eggshells all the time, and where there is a day in sight when we can have kids that are grown up and on their own. This is a lifetime thing. It's never going to happen. So some way or another, I have to make the best of it, for all of us. And most days, I think I can, but right now, I am not sure.