All the tough decisions---autism life in a COVID world

As the months go by and we are still living in this endless COVID bad dream, I suspect all of us living lives affected by autism are starting to feel the strain increase.  It's not at all easy for anyone, but for kids like Janey, and families like ours and so many of yours, it's a special kind of tough.

Starting with the new year, it seemed, Janey got more challenging.  We all did.  It's been a long, long haul, and it's winter, and the cases were increasing, and we all had been stuck together as a family for far longer than is mentally healthy.  The biggest issue was sleep.  Janey's sleep started a pattern of one night okay, one night with either a very late going to sleep time or a very early waking up time, and then one night of absolutely no sleep.  And although we did our bests to catnap while she was awake, or to sleep well on the nights she did, that kind of sleep cycle...wow.  We were snapping at each other, constantly tense, really not doing well.  

Janey, in trying to cope, I think, was developing some quite repetitive routines.  One was watching Toy Story 4, and sometimes Toy Story 2, over and over and over.  The other shows and movies she used to like weren't being watched at all.  And not even all of the two Toy Stories were, just certain scenes, repeated time after time.  And while watching them, Janey would laugh, that laugh I think you all know, an insane sounding loud almost humorless laugh, a fake kind of high decibel laugh.  The nights she stayed awake all night would feature that laugh off and on for hours up on hours.

We kept trying, as we have been, to do school at home.  We do the morning meeting, at 8, for which Janey showed varying levels of engagement, and then video lessons such as books with a theme for the week or lessons like a great one her teachers have developed about body awareness and pain.  When we can catch her in the right mood, she'll listen with interest and answer questions, but other times, she simply screams at the top of her lungs at the very mention of the classes.  We resorted to making the lessons a requirement before car rides or other fun times.  That's not how I want school to be for her, some kind of chore.  And that's never how it has been.  None of this is the fault of her teachers, who are doing a hero's job of it all in the midst of impossible challenges.  It's that remote learning is not how Janey learns, and I don't think it ever will be.

With all this, we decided after huge family debate to request that Janey go back to school, which supposedly was available for kids of her level of disability.  We had turned down what was called the hybrid model of learning before, where she would have been able to go to school 4 days a week.  I thought this was a reversible decision, and that by requesting she switch out of remote, she'd be quickly able to return to school.  Well, I should have known better, as in one of the hugely contrasts that exist, the difference between the fantastic teachers in Boston and the (I won't use some of the words I'd like to use here) middle and upper level central administration of Boston, the admin people showed their colors again, and it seemed somehow either impossible or incredibly complicated to switch her model.  Meanwhile, somehow there was supposed to be a switch for most special needs kids to in person on February 1st, but in one of the many conflicting and complicated emails I got, we were told since Janey was in the highest needs level and we had before requested remote learning for her, now that those with less severe needs were going to be able to go back, our previous decision to be remote had to stand, unless we did some complicated other form and (presumably) prayed it worked.  If you are confused, so am I.

However, Janey's teacher and I had the idea that perhaps Janey could go to school for one day, or one day a week, for state testing she had to have.  Even just one day was such a thrill for all of us to think of.  So a week ago Thursday, Janey went to school for a day.  She had a wonderful day.  We had a wonderful day at home.  The effects of that one day, even, last for days and days---better sleep, better toilet use, better moods, and Tony and I, after 10 full months of absolutely zero respite, had about 4 hours to ourselves between driving her in and picking her up.

Part of the day at school was a COVID test.  Janey wasn't excited about the prospect, and resisted at first, but her teacher told her that after the nurse "tickled her nose", she could have a lot of salami.  Brilliant!  She gave Janey a minute, asked her if she was ready, Janey said yes, and the test was taken successfully.

That first week's test was negative. We took Janey to school again last Thursday, so happily.  I especially needed a break.  Midweek I had developed diverticulitis for the third time in three years, with a fever and lots of pain, and a remote appointment and antibiotics and warnings of what signs to go to the ER immediately if I got.  Janey was tested again that day.

Saturday morning Janey's teacher called us to say that the pooled test, where Janey and one other child's COVID tests were combined together and tested, were positive.  Either Janey had COVID, or the other child did, or both of them did.  The school nurse called me a few minutes later (her teacher called me first to tell me in person, which I so much appreciated)  She went over the next steps, which was to get Janey her own COVID test.  

We are getting Janey's test today.  And I'll just note here, when mayors and governors and so on urge testing, well, could they make it a little damn easier to get a test, even in a situation like this where there is more than just an exposure, where there is a 50% chance Janey has the virus?  Can they make it so you don't have to call around for hours and EXPLAIN to the nurse you finally talk to what pooled testing even is, and hear her say "I've never heard of that! That's stupid!  I don't understand why they would do that!" and then act like saying Janey could get a test is some kind of huge favor, and then asking me "Will she even cooperate with the test?"  

Janey has a few mild symptoms which might or might not be significant.  A few nights ago she was coughing a bit, and she had some diarrhea, which is rare for her.  But yesterday and today she seems perfectly healthy and happy.  And thankfully, the rest of us don't show any signs so far.  But still, of course, we have to quarantine, and in fact, the whole high school is going to have to go fully remote (although only about 20 kids weren't remote)  So, for now, our plans of having Janey go to school in person again are at the very least on hold for a while.

I don't have a strong conclusion here.  Were we wrong to send Janey in for those two days?  My older son strongly, strongly feels we were, and maybe he's right.  But as I told him, he hadn't been up night after night with Janey.  He wasn't the one responsible for keeping her together day after week after month, or for trying to get her to access an education in a way she didn't want to and couldn't seem to, she wasn't the one without one second of respite from a very high needs child for literally almost a year.  We want Janey to learn, to be with friends, to have fun, to get the benefits of the wonderful teachers and aides and therapists that are there for her.  But of course we also want to be well.  And you can't really be mad at a virus.  It's doing what all of us are doing---trying to stay alive and go on.  

I'll try to keep this blog updated on Janey's test results.  I hope you all are hanging in there.  Please know you aren't alone during these long months.  There's a lot of us out there living this life.  Whatever decisions you make about schooling, know that you are doing the best you can in your situation.  And join me in hoping that a year from now, this will be part of history.  Please.

HOME!

Yes, indeed, after 18 days at Mass General Hospital for Children, Janey is finally home.  It's wonderful to have her here.  I'm not going to write much tonight, but I know in the coming days, weeks, months and probably years, I'll be reflecting on this whole experience.  For now, I mostly just want to write a few thank yous.

Janey, right before heading home!

First, to my family and friends for being so supportive during this whole ordeal.  It was wonderful to have everyone at the other end of a phone line or an internet connection.  I loved the cards and even a few packages sent to me by people I don't know in person but know through this blog and feel very close to!  My local friends were great, and I most certainly could not have gotten through the combination of Freddy's graduation week and the hospital stay without them.  William and Freddy held down the fort at home and visited Janey often, and were their usual terrific selves.

The main entrance to Mass General

Next, to all of the staff of Mass General that worked with Janey.  It so very much shows that the whole hospital has been trained in autism, but beyond that, that the hospital seems to have a special air about it.  We've spent time in other hospital, but there was something about this one---a feeling of caring on a personal level.  Janey's surgeon, Dr. Cassandra Kelleher, took so much time to talk with us and to explain everything, and to show she saw Janey not just as a case but as a child, one she cared about.  The nurses---wow!  So many thanks to Karen, Daisy, Katie, Jenny, Vicky...and all the rest whose names escape me just now but who I will always be grateful to.  I never once, not for a minute, felt like Janey's autism was something they found difficult to deal with.  They listened to what we said would work best with Janey and did everything they could to make every procedure and test as easy on her as possible.  Everyone else at the hospital---the people who brought the meals, the staff in the playroom, the OT who wrote an autism plan for Janey, the CT scan people---everyone was respectful and kind to Janey and to us.

Janey is nervous in the elevator, but Daddy is right there as always

My biggest thank you right now is to Tony, my husband.  I think sometimes I don't mention often enough here what an amazing father and husband he is.  This was one of the toughest times we've ever gone through in our lives, and he was so wonderful.  He put his stressful job totally aside and took the last two weeks to just be with Janey, at her side.  He let me keep my sanity, and his presence helped Janey stay calm.  She loves Daddy like no-one else on Earth.  It's not an easy gig, being Janey's father, but he excels at it.

So---now on to recovery at home.  With everyone's help, I think we will make it.

Janey's burst appendix story---Part Six

When we left you in this continuing saga, Janey was off getting a CT scan to look for abscesses.  The CT scan was quick, and Tony went out to get a bite to eat when one of the surgeons came back to tell me that yes, it looked like Janey has multiple abscesses.  That wasn't exactly what we wanted to hear, but I am so glad they did look for them.  Her head surgeon came in a bit later and explained things to us more.  Janey had 5 abscesses.  She was going to need interventional radiology to put drains in them.  At the same time this was done, they would put in a PICC line to be able to give her nutrition, IV medication  and draw blood, without having to do lots more IVs.

Janey was taken down for the procedure about 2, strangely, a week right to the hour after she had the original surgery.  We signed more consents, and left as she was being put under, back up to her room to sleep (although I couldn't sleep).

The big question last night was whether I would go to her brother Freddy's Prize Night.  The night is the second biggest night in the six years at Boston Latin School, the school Freddy graduates from on Monday.  I have looked forward to the night for years, but never dreamt I would have to decide whether to go while Janey was in surgery.  After talking to the surgeon and to the nurses, I did decide to go.  Tony stayed here and promised to keep in touch with me by text, which he did. 

The night was wonderful.  It was held at an old church building on the campus of Harvard, a beautiful venue.  There was amazing music played by the string orchestra of the school, including a sad piece which of course set me to crying quite a bit, partly about Janey and partly from thinking of an era being over with Freddy.  My emotions right there were about as intense as emotions get.  Watching the prizes get given out was so interesting.  Everyone got a prize of some kind, and I was very proud that Freddy got two, both connected to his declamation (speech giving) skills.

Then it was back to reality.  Janey had come back from surgery while I was gone.  I saw her drains, which are a little scary to look at but not that bad.  They were able to drain 4 of the abscesses with 3 different drains.  One was too surrounded by bowel to be able to drain.  Hopefully that one will resolve on its own.  Janey was doing remarkably well.

Today, Janey isn't feeling quite as good.  Her fever is up a bit, which was sort of half expected, and she was in a bit of pain.  They authorized clear liquids, but she had just a sip of apple juice and later threw up.  Her stomach just isn't ready yet.

I have to say here how wonderful almost everyone at this hospital is.  The nurses on our floor are just plain amazing.  They are so kind, they care so obviously for Janey, they are knowledgable and competent and just...wow.  The surgeons have also been great, especially the surgeon who did the original surgery on Janey.  She listened to us, answered all our questions so well, and even remembered Freddy and answered me seriously and truthfully about going to his prize night.

And---Janey has been amazing also.  Overall, I can say there's been many times she's gotten far more upset over us saying no to a trip to the ice cream store than she has over major things here like having an IV put in.  She is alert and watches everything, and is learning new terms.  Today, she said "Want to call the nurse?" as I picked up the control with the nurse button, and she has started calling her stomach area her "belly" as she has heard them do.

Sleep is the toughest thing.  We got some last night, but I am living in a constant state of tiredness.  Often, also in hungriness, as I don't eat the room since Janey can't, and it can be hard to find time to sneak out and get something to eat.  This may be the most effective diet I've ever been on.

Writing in this blog and hearing from all of you truly is keeping me going.  I need this writing more than anything.  I don't think I'd ever remember these days clearly or be able to work through them in my head without it, and it's a fantastic bonus to be able to share Janey's story.  I hope none of you ever have to have your child with autism in the hospital for an extended time (or any child at all!) but I hope if anyone does, my writing will help a little.  So I will close for now, until part seven......

The Long Day's Journey---Part Two

After we got the news that Janey would be going to Bradley Hospital, we started packing up the room and getting ready for the call that is was time to go.  We were told it would be a few hours, probably into the afternoon before we went, which was fine.  Janey wasn't having a good day.  Maybe just the change in the mood and the moving around of the stuff in the room upset her.  She was screaming a lot, very agitated---not happy.  Our "sitter" for the day was the same one we had had on Sunday.  On Sunday, she had been one of our least favorite sitters.  This day, however, after we took a while to talk to her, we found her to be a wonderful woman---warm and understanding and interesting.  It taught me something I need to be taught over and over in life---that first impressions aren't always right.  She told us she was praying hard for Janey.  I am not much of a prayer, but I am a huge appreciator of people praying for me, and I was touched by her saying that.

As the day wore on, it was apparent that Janey's discharge was taking longer than anyone had said it would.  Finally we were told there was some kind of hold-up with the insurance, but that it would be taken care of and we shouldn't worry.  Well, I worried.  A nurse once again checked with the referring department, and they said it wasn't the insurance, it was that they were waiting for a call from Bradley, and she suggested I call Bradley myself.  I did, and they said it WAS the insurance---that they had not yet gotten the authorization.  I told that to the Children's Hospital people, and they said not to worry again.  I decided to call our insurance myself.  That was not a fun call.  The department that deals with our particular brand within the brand closes at 4:30pm.  I called about 4:35, and although the woman I reached was very kind, she said there was no way at all she could access those records.  I told her we could lose a placement we had been desperately waiting for, and she was very upset, but I don't think sincerely could do anything.  I started calling every number on my card.  I finally reached someone who might have been able to help.  At that moment, a nurse found me and showed me a wonderful set of numbers--the authorization had come through.

The next wait was for the ambulance to take Janey to Rhode Island---about an hour's drive.  It's a little unusual for people to be moved medically from Boston to Rhode Island.  Usually it would be the other way around.  So it took a while to get the ambulance.  In the meantime, Janey was very upset.  At one point, she suddenly lunged at and bit the sitter.  The sitter was great---she said it was nothing, that Janey was sick and we should not worry about it.  But word got out and the nurse in charge told the sitter she had to go report the incident to the hospital police and then go to the workman's comp office.  The sitter tried to say the bite had not broken the skin and there was no need, but the nurse insisted, so the sitter left and I never really got to thank her.  She was the last sitter we had---I guess since we were leaving, it was no longer considered necessary.

Finally, about 8 o'clock, we got an ambulance.  The EMTs were wonderful.  EMTs must be a special breed of people---they always seem great.  Janey was thrilled to be leaving the room.  She got onto the gurney very willingly, and was happy and alert almost the whole long trip to Rhode Island.  I saat behind her, so she couldn't see me, and I did have to reassure her several times that was there.  But overall, the ride was great.  We arrived at the hospital about 9.

My first impression of the hospital, in the dark, was that it was much bigger than I pictured---all kinds of buildings.  We were ushered into the admitting lobby.  A security guard checked us for metal and took my bag to inspect.  We didn't mind that at all---it kind of felt reassuring.  The lobby was lovely---a gorgeous room, and we were met right away with lots of people.  There were a lot of preliminary questions to be asked, and paperwork to be done.  Janey was mostly happy, although she did bite herself a few times and once lunged at Tony, so it was seen why she was there.

One funny moment---I guess to certify that Janey was being admitted voluntarily, since she is 10, if possible they wanted her to sign a form saying she was there willingly.  Janey can make a "J", and occasionally write the rest of her name if she is in the mood.  We got the form and explained it to her---I am quite sure she didn't totally get it, but she took the pen and made a big "J" all over the paper.  And that counted.  Janey's first signature of a legal document!  Thanks to all the teachers who taught her to write the J!

After a bit, a nurse came to take Janey to her ward.  We stayed behind for a bit, signing a lot more papers.  We learned a bit about her ward.  It holds in total up to 18 kids, in two wings.  Right then, there were 16 kids including Janey.  And were were told that at the current time (even then at night) there were SIXTEEN milieu therapists.  Milieu therapists was a another new term for us.  Here's a definition---Milieu Therapist  That is an amazing amount of hands on help!  We were starting to realize we might be in a very good place.

We went to say goodnight to Janey in the ward after that.  She had been given a room, her own room.  It has a nice bed and a comfy chair, and a bathroom next to it.  We were told someone would stay outside her door until she fell asleep.  She was happy and excited.  When we said goodnight, she waved dismissively and said "goodbye!"  She has never been one to have a hard time separating from us, which in this case was good---we were able to leave without breaking down much.

The ride home continued the theme of the week---being stuck.  We had a nice drive for the first 45 minutes or so, although we were both beyond tired.  Then---nothing but brakelights.  Something had stopped traffic on Route 95.  We sat totally stopped for over an hour.  We finally turned off the car and just waited.  We called my sister in Colorado to see if she could look on line what was happening, as we don't have any smart phones, just dumb phones.  She figured out the problem was something to do with downed wires.  Finally, traffic started again and we finally got home about 1 am.

We slept very soundly last night!  Now we are about to call to see what time the hospital wants to meet with us today.  We are going to meet Janey's psychiatrist and start working on a plan as to what happens next.  I am feeling hopeful, but still---overwhelmed, nervous, scared, stunned.  I think she is in the right place, and I think we are on our way, but it's going to take a while for me to be able to really feel less than on full alert.  It's been an experience so far like none in my life, like no experience I ever expected to have in my life.  And it's a journey that is going to continue.