Oxygen masks are hard to put on

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

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

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

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

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

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

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

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

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

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

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

With love to the school I didn't want

Today is Janey's last day of 8th grade, the last day at the school she's attended since the middle of 3rd grade.  And I am looking back with love on her years at a school I didn't want her to go to.

Janey and her classmates

Until late in 3rd grade, Janey went to an inclusion school.  It was the same school William and Freddy went to, and it was a special place.  Each classroom had a regular ed teacher as well as a special ed teacher.  Kids with all kinds of special needs were included, completely. I loved the school, and I loved the concept.  I loved everything about it, right up until they couldn't include Janey any more.

Janey getting her diploma!

The time of transition to the school Janey is attending her last day of today was very, very hard for us.  It was the time I found out that the phrase "crying yourself to sleep" can be literal.  I had pictured Janey at the inclusion school until she was 22.  I had been involved with the school for 13 years at that point, and I wanted it to be 13 more.  But I know now that it was the right decision to move her.  Inclusion is wonderful, but it doesn't work for all kids.  At the time Janey was moved, she was often screaming all day, lashing out, pulling hair, biting.  She had the love and support of her classmates and teachers, but she was far from happy, and she was (although I know you aren't supposed to worry about this, but I do) keeping the other kids from learning.  She wasn't included, because it wasn't safe to include her, and so an inclusion school for her was not at all inclusive.

So we moved her to her current school.  It was hard.  But from the very first day, we were made to feel welcome there.  It was a different feel of school.  It's a much bigger school, less family-feeling, but it was a place that accepted Janey, and embraced her.

Help when she needs it

Janey's early years at her new school were not smooth ones.  I've never, ever forget the call---the day her behavior was so extreme that she went right from school to the emergency room, and then to many days at a psychiatric facility.  But I'll also never forget the love and caring the school showed her at that time---how her teacher rode in the ambulance with me, how the ABA director drove the long drive to where Janey was placed to see her and talk to the staff, and most of all, how the school welcomed her back.  That is, I can see now, what scared me most.  Janey had already been once cast out for being simply too...autistic.  I was braced for it to happen again, for the school to say they simply couldn't handle her.  But they seemed surprised I would even ever think that.  They were committed to Janey.

Music bonded these two!

Over the years at Janey's school, we have had so many teachers that were simply amazing, in their dedication, skill and love.  Beyond that, the staff---the classroom paraprofessionals, the therapists, the program leaders, the principal---wow. They are all people who have chosen to work with autistic kids, and beyond that, people that very obviously love our kids, people that get them, people that see them as the coolest, most interesting kids around (which they are).

Another wonderful friend of Janey's

Love and a bond you can see

We went last week to Janey's moving up ceremony.  I can't even tell you how many different people made a point to talk to me about Janey, about the special routines they had with her, about her love of music, about what a kick they get out of her.  It struck me so much how they were talking to me about the same Janey I see---a cool, quirky, at times stubborn and challenging but unique young woman.

And so today, again I am crying a bit about Janey and her school.  This time, it's not about her being sent there, but about her leaving.  Thank you from the bottom of my heart to the Joseph Lee School for caring for and loving my Janey.

Thinking about guilt

A few weeks ago, a tough day hit my family.  I thought the toughest part was going to be going to the dentist.  I had quite a toothache, which I had ignored for a while. It was in my one remaining wisdom tooth, and the dentist told me right away it had to come out.  While pulling it out, the tooth next to it fell apart, so they both were extracted.  I have Sjogren's Sydrome, and that does a number on teeth.

At just about the exact time my teeth were coming out, my father in Maine had a terrible fall.  He was on a ladder, and it slipped.  Holding onto the ladder, he was slammed to the ground.  Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae.  Later, it became apparent he'd also had a bad concussion.  He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks.  Thankfully, he's doing much better, but the recovery was tough.  He's 77, and anesthesia does a number on older men, we've found out.  He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought.  Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.

The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain.  However, immediately, I felt I should be there.  I still feel that, a bit.  It wasn't possible. My pain level from the extraction was very high, for about 10 days.  That's another gift from the Sjogren's Syndrome.  I have almost no saliva, and that makes it very hard for a mouth to heal.  I could barely get out of bed.  In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat.  We were ready for a new car, but shopping for one?  That was tough.  It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.

The guilt of that week---I can barely describe it.  My father was in terrible shape, and I couldn't get to him.  In my mind, the rest of our reality seemed unimportant.  I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"

I know that from the outside, things look differently.  But from the inside, guilt is a strong and often irrational emotion.  Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities.  Guilt just pounds away at you.

Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home.  There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital.  My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus.  In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.

With my clearer thinking, I've realized a few things.  The biggest of them might seem a little unrelated, but it hit me hard yesterday.  For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it.  But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school.  I trust her school completely.  We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her.   When she isn't in school, I want her with Tony, her brothers or me.  That is what I feel good about.  I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.

The other realization is that hard as it might be, I need to prioritize.  In other circumstances, of course I would have been by my father's side.  But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first.  When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.

I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often.  It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do.  It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.

Ideas for the toughest times

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

Toss out the regular rules

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

Trade off

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

Get some mental support from those who get it

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

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

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

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

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

Take it from me---it WILL get better

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

Re-evaluating Janey

Today was supposed to be Janey's IEP meeting day, the re-evaluation one that takes place every three years, but one of her therapists didn't have a chance to evaluate her, so it's been delayed until the end of the month.  I did get, though, a progress report on her ABA therapy, and it was interesting to read. As I was preparing mentally for the meeting over the past weeks, I was also doing my own mental evaluation of the last three years.  How has Janey grown?  What areas are still tough?  What do we want to work on for the future?

The last three years for Janey has been eventful.  As most of you know, they featured hospital time, both time in a psychiatric hospital (with six horrible days of "boarding" in a children's hospital before that), and time in a regular hospital, for a very complicated burst appendix.  Those stays are the big things that stand out about the last three years, but there's a lot more to think about.

I'm not sure I'd go that far, but it's the only image I found that worked at all!

How would I define Janey right now, if I looked at her with fresh eyes?  Well, she's mostly a happy 12 year old, and that is wonderful.  That alone is almost enough.  She has many more happy than sad days.  She knows what she enjoys, and she knows how to ask for those things---car rides, music, videos, food, snuggling.  She's gone through puberty earlier than most, and she looks like an adult, physically, which is tough in some ways but not in others.  She continues to be very intellectually disabled.  She talks mostly in single words or phrases, she doesn't reliably recognize letters or numbers, she can't write or draw---she is and, baring a miracle, always will be unable to care for herself, live on her own, work (except in some hugely sheltered way).

The joy of her life, and the area where she in many ways is far beyond most, is music.  She has hugely sophisticated taste in music.  She knows what she likes and doesn't like, and lets us know.  Although she won't perform on demand, she very often surprises us by singing a song we don't think she's heard for years.  I do think she knows every song she's ever heard by heart, tunes and lyrics.  Music is her joy in life.  She learns far more easily when music can be part of the lesson.  She loves to dance.  It would be impossible to describe Janey as a person without mentioning music.

There are parts of life with Janey that are intensely frustrating, for us and we are quite sure for her.  Toilet training---not there.  Closer than three years ago, but inconsistent and far from reliable.  Communication, especially in terms of what is upsetting her, is still very hard for her.  She still often self-injures, by biting her arm or scratching her chest.  She occasionally lashes out at us or others---not as often as in the past, but when she's very upset, it's a concern.

The ABA evaluation, even in their required formal language, captured a lot of what makes Janey Janey.  Even the statistics---there would often be a task she did with 100% accuracy on one date and then with something like 20% accuracy on a later date.  The notes say that much depends on her mood and her level of arousal.  Janey in her best mood is so different than Janey in her worst mood that it's hard sometimes to believe she's the same person.  Nevertheless, she's made progress, and sometimes we even see school progress carried over to home.  She will ask for help when she needs it, she sometimes tells us when something hurts ("does your toe hurt?), she responds with "yes" and "no" more readily than she used to.

I think almost the more important three year re-evaluation is that of Tony's and my attitude.  I don't think any parent could go through the scares we did with Janey without an intensification of how much we treasure her.  We are so glad she's here with us.  We worry less than we used to about progress.  We accept that much of how Janey is is how she will remain, and that is fine.  On the less positive side, in some ways, we are tired.  We still so very much wish there was more respite available.  It's the week of both our birthdays, and that is always a reminder that autism, or Janey's brand of autism, never, ever gives you a break.  She comes first.  We don't have a life outside of caring for her during any non-school hour.  We love her so much, but she consumes us.  We can accept that, but I think we could be better parents to her with more help.  There are parts of life with Janey that would challenge the patience of a saint.  And then, there are parts of life with her that would delight and enchant anyone.

It's been a true privilege to share Janey's life with all of us, and to be able to be a part of your lives.  I will continue to do that for as long as I can, hopefully for the rest of my life.  It's the way that, with the restraints life with Janey has placed on me, I can try to light a candle instead of cursing the darkness. I think of all the others living this life often, and I hope all of your re-evaluations contain some elements of joy.

When asking politely doesn't work...

Janey woke up in the middle of the night a few nights ago.  It's been happening a little bit more lately, although still not at all as often as it used to.  This awakening, she was quite cheerful, but not at all tired.  Tony and I took turns staying up with her, as we usually do.  When my turn came, I tried to get her back to sleep by putting a whole bunch of blankets over her, which sometimes works.  This time, though, it just made her laugh and laugh.  And then she said "Pillow?"  I was a little surprised, as she isn't big on pillows, but I gathered up some and gave them to her.  She just kept repeating "pillow?" until finally, either she or I or both fell asleep.

The next morning, the first thing she said again was "Pillow?"  And because it was morning, I was awake enough to realize what she meant.  She was looking not for any generic pillow, but for Special Pillow.  

Special Pillow

Special Pillow is actually a pillowcase, put on any pillow.  It's the pillowcase she was given in the hospital when she had the burst appendix.  She became hugely attached to it there.  It didn't leave her side for weeks.  When we came home, she remained attached.  She never sleeps without it.  I wash it when I can, but if I want to make sure she sleeps, it better be around at bedtime.  It's the first and only object she's ever really been attached to.

It's a sign of how sleepy I was in the night that I didn't figure out what the problem was.  Special Pillowcase had fallen off the pillow it was on, and was lost among the blankets.  In the morning, when I finally wised up, I found it quickly, and Janey grabbed it for a big hug.

I've been thinking a lot about this whole incident the last few days.  The unusual part of it was how Janey didn't get a bit upset.  She just asked, repeatedly but without urgency, for the pillow.  It was her mild tone and lack of insistence, I think, that caused her not to break through my tired haze and figure out what she wanted.  

We often tell Janey just to ask for what she wants, not to scream or cry or throw a fit.  We tell her that she doesn't need to yell to get what she wants.  However, maybe she does.  When you don't have a lot of words to use, maybe tone of voice and volume and body language are necessary to get your point across.  Because she asked exactly how we ask her to, in a calm way, I didn't figure out what she meant.

I'm not sure what to make of this revelation. I think the big message for me needs to be to listen very well to her quiet and calm words (although I can't make any middle of the night promises).  Another thought, though, is that I want to try to be more understanding when she does scream.  Most children would have been able to say "I can't find my special pillow, and I can't sleep without it.  Will you help me find it?"  With Janey's mostly single word way of talking, I need to work hard to figure out what she means.  And I need to mentally translate screams into "This is urgent!  Pay attention to me right now!"

I'm not sure why Janey didn't scream about the pillow, but my guess is her desire for it was a lot like a lot of her OCD type arranging.  Often, before watching a video or eating or doing other enjoyable things, Janey arranges her surroundings.  She will turn off my computer monitor, move any laundry baskets to a different location, turn lights on or off, put the remotes on the table at straight angles, empty any half-full mugs of coffee into the sink (and then put the mugs back where they were, not in the sink!) and, depending on the day and her mood, a variety of other rituals.  She never gets upset doing these things.  She treats them like a job that has to be done---she does them in a businesslike and efficient way.  I think the pillow being with her feels like the monitor needing to be off---something to be checked off on a list.  Unlike with my OCD and I think most people's OCD, she doesn't seem to feel upset about needing to perform the rituals. So the pillow not being in place was more just something she needed to note and fix, not something terribly upsetting.

It's amazing to me sometimes how complex Janey can be.  I re-learn every day how much is going on in her mind, how much she can tell me if I learn how to listen.  I'll keep trying, Janey!  Thanks for being patient with me, sometimes!

Unclouded day after

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

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

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

Thinking about my sons

My boys are home from college.  I guess it would be more accurate to say my men are home from college, as they are both really adults now, but they will always be my boys.

They both aren't working this week, and Janey is in school still, so I'm getting a rare treat, time with them both, without schoolwork looming over them.  It's great.  But it's also making me think a lot about how Janey has affected them.

In some ways, because they are both so much older than Janey (7 and 10 years older), it hasn't been the typical situation for siblings for a child with autism.  I can't even quite wrap my mind around how it would have been if they all were close in age, although I know many of you have that setup.  Because they are older, I'd say it's been easier on us as parents, but maybe, perhaps, actually tougher on them as siblings.

From the time Janey's tough behaviors really started, when she was around 3, in many ways, the boys have been on their own.  Of course, not totally, but so often, we were simply not able to do things as parents for them that most parents would do.  We missed school events, we were unable to help much with homework, we couldn't go on family vacations or eat out or actually do very much as a whole family at all.  We used a lot of "divide and conquer".  One of us would care for Janey, the other would go to the play or do the drive to a friend's house or sneak out for a birthday meal.  The boys almost never got both of us at once.

Way too often, I read cheery, almost flip accounts of how having an autistic siblings helps kids.  They are supposedly more compassionate, more caring, somehow bettered.  That might very well be the case.  I am very, very proud of my boys.  They are fine young men.  But I don't think this is because of Janey's autism.  That doesn't seem like a fair burden to put on either Janey or the boys---that somehow she made them better.

I think the truth is that they missed out on a lot.  I think about the time of Freddy's graduation from high school, last year.  That was an exceptional time, due to Janey's long hospital stay, but only I was able to attend his graduation.  Neither of us saw him off to his senior prom.  We weren't there for just the general excitement that goes along with the end of senior year.  I can't sugarcoat that.  He missed out.

Both boys have learned to be independent.  They probably had more freedom and less parental involvement (or interference) than most kids their age.  We certainly weren't able to be helicopter parents.  Although that might be a positive, it wasn't a choice.  It wasn't a parenting style.  It was just reality---how it had to be.

I can't even begin to count how many times there were that the boys wanted to do something, like watch a TV show as a family, but Janey had a meltdown and we wound up not being able to.  I think too often, we just expected the boys to understand that her needs had to come first.  I feel guilty about this, although I don't honestly think there was a way we could have handled it differently.  If we tried, as we did a few times, to power through Janey's outbursts and screaming and keep to our plans, it wasn't enjoyable, and the boys usually were the ones to call it, to give up.  I can't sugarcoat that.  I do know that as kids get into their teens, hanging out with parents is not always the top fun on their lists, but I wish we'd had more chances to give it a try.

This is a pretty downbeat post, but it's an honest one. I can honestly say, though, that the boys love Janey and she loves them.  We're a family.  Having a sibling with autism is a fact of the boys' lives, and always will be.  She's not a character builder, or a barrier to overcome, or a inspirational story to tell.  She's their sister, and all three of my children are amazing people. I'm pretty lucky that way.

Grateful as well as angry --- a pneumonia story

It's Friday morning, and Janey is home and fever-free, and I am finally sitting down to try to make sense of the last few days.

When I last wrote, Monday, we had been through a clinic visit and an ER visit, without any answers. Another clinic visit Monday night, another temp at a low point just then, another wait and see.  Janey's fever kept getting higher as Tuesday rolled along, even with Tylenol.  She had an appointment set up for 3:45 at the clinic, but when I took her temp, it was again showing up as 106.  I called the clinic and asked if we could be seen sooner, and they said to come right in.

Finally, we saw Janey's own pediatrician, a doctor I like more every day.  Before she came in, the medical assistant took Janey's temp under her arm, and it showed up at 99, which I knew was not accurate.  Janey was screaming and moving around.  Then a couple people came in and took a nasal swab for flu.  Again, we had to hold her down.  When Janey's doctor came in, I pulled out the crazy old forehead thermometer and took Janey's temp again---and again, it showed 106.  The doctor was startled.  We all agreed it was probably reading a little high, but at her request I took my own temp with it and that was normal.  She then took Janey's underarm temp, with us all holding her down, and it showed 103, which translates to 104 as you add a degree for under the arm.  Finally, someone was seeing that Janey really did have a high fever.

At this point, Janey's skin looked odd---mottled and pale.  She was coughing an increasingly deep cough.  The pediatrician made the call to have her taken to the ER by ambulance.  As we were waiting for transport, the flu swab came back, positive for influenza type A and B---both types.  The ambulance showed up and we took a siren-filled ride to Mass General.  Freddy was with us, and he rode in the front.

So---back to the old Mass General ER, site of absolutely no help the previous Saturday night.  But I knew it was the gateway to great care, if we got admitted.  The plan initially was not for that, though.  A hugely arrogant seeming doctor came in, announced he was the "big boss" and did a quick exam of Janey, and left saying in a sing-song voice "not so bad, not so bad"  The plan was to have a chest x-ray, give her some fluids, do some blood work and send her home.

Janey cooperated for the chest xray in a way that was truly amazing.  She had to do things like hold onto a bar above her head and lean forward and scoot up on the bed, and she did all of them.  I was shocked at her understanding and cooperation.  The chest xray came back showing she had pneumonia in her lower left lobe.  The blood work showed a low white blood cell count.  And after a change of shift to a different "big boss", Janey's fever started to come back up.  She was shaking violently.  It wasn't time for more Tylenol or Motrin yet.  And finally, around 9, we were told she would be admitted.

It took until about midnight to get into a room.  The time in the ER felt like purgatory.  Freddy left around 5, Tony got there around 7, but there was only one chair in the room, and he had barely slept the night before and worked all day, so he went to the car to sleep.  He came back in around 10 as we waited for a room.  Janey was looking sicker and sicker.  Finally, we were taken up to our room.

Going back to the pediatric floor felt bizarre.  We had spent nearly a month there last May with Janey's burst appendix.  It felt like a homecoming in a way, one we had never wanted to come back home to, but I knew finally we would get some good help.

That night, Janey's fever spiked very high again.  She was put on IV antibiotics.  The next day, we were able to talk for quite a while to the same doctor that had been the one who broke the news to me that Janey's appendix had burst, last May.  He, as well as everyone there, was great---listening to us, being respectful and kind to Janey, taking into consideration her autism at all turns and giving her wonderful care.  Finally, on Wednesday afternoon, she had her last fever.  Yesterday, it was decided what antibiotic to send her home on (one that says in the instructions "used to treat a variety of bacteria infections as well as anthrax and the plague", so it's pretty hard-core!) and in the afternoon, with Janey looking incredibly better, we were released.  Strangely, when they had repeated twice the flu swap, it came out completely negative, so the conclusion was she had some unknown viral infection, but the main problem was the pneumonia.

I have been thinking non-stop why, even after the whole appendix ordeal, it took from Saturday till Tuesday for Janey to get effective care for a very high fever and pneumonia.  Part of it is just that I've realized it often takes anyone a while to get treated.  So many illnesses resolve on their own, and I almost feel like it's a plan in the medical world to let things ride a bit and see if they get better.  But part of it is her autism.  I pinned it down to two crucial events/reasons...

The first was the Saturday visit to the urgent care clinic, when Janey resisted her temperature being taken under her arm and the decision was made to not take her temp at all.  I KNOW her temp was extremely high then.  Her pulse was 250, which even if that was somehow off a little, is extremely high, and she felt to be burning up.  In defense of the doctor that saw her there, she did realize Janey was pretty sick, and put her on antibiotics (ones that weren't strong enough for pneumonia, we were later told, but would have treated strep throat)  But I think if she had had a good temp taken, it would have shown a high enough temp that we would have been sent to the hospital then.  The feeling was---don't force her to get her temperature taken and "upset" her.  Well, that is my fault.  I knew it needed to be taken, but I didn't insist.  We all fall victim to not wanting to upset her.  But---the same standard has to be used for Janey's medical care as any other child's care.  If someone shows signs of a terrible fever, they NEED to have their temperature taken.  Maybe not at home, but it needs to be taken in a medical office, and recorded.  That was the first fail.

The second fail was the first ER visit.  What a joke that visit was.  Janey's fever was down, and I was not listened to.  I tried my damnest to voice that Janey does not show illness or pain normally.  I wanted blood done, I wanted a chest xray.  But the arrogant doctor (a different arrogant doctor than the second time), despite what I was saying and despite the fact that the ER last May had missed the first time a burst appendix, which you would think would make them extra careful, seemed to assume that I was being an anxious parent, that Janey was just plain fine.  That is where the autism comes in.  Janey was ACTING fine.  A typical kid of 11, after being terribly sick all day, would be able to explain how she felt, how her lungs felt, how scared she was.  But Janey, when she felt better, acted fine.  She wasn't feeling hugely sick right then, and she has no understanding that that might be a temporary lull.  And I didn't press hard enough, I guess.  So---it took from Saturday until Tuesday night for her to finally get the right antibiotics to start truly helping her.

I am left feeling a few things.  One is angry.  I am angry that yet again, Janey's autism prevented her from getting timely care.  Another is grateful.  We love Janey's new pediatrician, and once she was able to see how sick Janey was, she acted very quickly.  She communicated with the hospital and with me, and she was firm in what she said Janey needed.  We are also grateful for the wonderful care on Ellison 18, the pediatric ward at Mass General.  Many of the doctors and nurses remembered Janey well from her last visit!  It was great to have Daisy as a nurse again (shout out to you, Daisy, who sometimes reads my blog!) and the other terrific nurses.  We hope we'll never be admitted to a hospital again, but if we are, it will be Mass General, even if we aren't crazy about the ER.

And now, a day of rest.  Tony is home to help with Janey---another week of mostly missed work for him, but luckily he has enough time saved up.  I could write on with more and more thoughts and happenings of the last few days, but for now, I'll close, and take another nap.  And thank all of you for your kindness on the Facebook page---your thoughts, prayer and comments are what keep us going a lot of dark days.

Autism, Communication and Being Sick

Janey is sick.

In her early years, in fact, until the whole appendix ordeal, Janey was rarely sick.  But lately, that seems to have changed.  She missed a few days of school in December due to a bad cold, and now, she has something else, maybe the flu.  She had a little cough last week, not enough to have to stay home, but on Saturday, she seemed worse.  Around 3, she got rapidly sicker. She was shaking  a huge amount and felt extremely warm.  We couldn't find the thermometer that works for her (she won't hold one in her mouth), but she was sick enough we took her to the urgent care clinic.  They ALSO didn't have a forehead thermometer, but it was obvious she was burning up.  Her pulse was 250, and she was very lethargic.  She wouldn't open her mouth, but her ears were fine.  The doctor decided to put her on antibiotics, with the thought she probably had strep.

Our thermometer.  Accurate?  Not sure...

We got home, and I found the forehead thermometer.  And took Janey's temperature.  And was shocked by what I now know must have been a faulty reading.  It was 107.  I am told that if she was really that hot, she'd have been in a coma or something.  I took it again a minute later, and it was 106.  I took mine, and Tony's, and Freddy's, all of which read normal.  I took Janey's a few more times---over and over, 106.  I called the nurse line.  They told me to take off Janey's clothes and give her a tepid shower, and call them back in half an hour.  We had given Janey Tylenol just before I took her temp.  I did as instructed.  In half an hour, Janey's temp was 104.  The nurse told me when I called back to take her to the ER.

I hate emergency rooms.  No matter how good a hospital is, the ER seems like the weak link.  The ER was the place that didn't even touch Janey's belly, that we can remember, when it turned out that her appendix has probably already burst.  But I was scared.  I'd never seen a fever that high.  So Tony drove us to Mass General.

I don't like ERs any better now.  By the time we got there, for whatever reason, Janey's temperature was normal.  She was being herself, screaming and then being cheery and lively.  I tried to tell them about her fever just a bit before, but I honestly think they thought I was making it up.  I felt like screaming "Yeah, I came here just for fun.  No better time than an ER on a Saturday night with an autistic kid.  Good times, good times"  They gave Janey a very minor exam and sent us home.

Yesterday, every time the Tylenol or Motrin ran out, Janey's temp was back up to 104 or so.  She has a dry cough and she slept most all day.  Today I will call for an appointment at her regular doctor's office.  I hope they listen to me.  It's very possible she has something viral, a flu, that will just run its course.  The ER doctor did manage to look in her throat and see it was fine, so it's not strep.  But the point is, I don't know and she can't tell me.

I used to be a lot more laid back about illnesses.  But when you have a child with a burst appendix, in the hospital for almost a month, a child that presents hugely atypically, even with her blood tests---you get scared.  You doubt yourself.  Janey, along with many kids with autism, doesn't react to illness in typical ways.  I do wonder if this is even on a physical level as well as emotionally.  She was almst never sick for so many years, even when other kids in her class got sick.  I think her body overreacted to any virus or bacteria, and kept any symptoms from showing.  Even now, I think when she does get sick, it takes a pretty strong strain of whatever to lay her low.  And she can't accurately tell me what hurts, or if she has odd feelings.  For all I know, she always hurts or has odd feelings.  I certainly hope not, but I don't know.

So, we fumble on.  I hope Janey's better today.  Right now, she is peppy, and after taking Motrim, fever-free.  But who knows?  We will keep on trying to make sure she gets proper health care, and we will try to educate medical professionals on the reality of life with low-functioning autism.  It's all we can do.

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

Janey is 11!

In many ways, I'm glad to see Janey's year of 10 being over.  It was a tough year, by any standards.  It featured two long hospitalizations---one for psychiatric reasons, one for a ruptured appendix.  Partly because of that, her school year was rough, with many absences and a lot of behavior issues, and not much progress, if any, academically.  However, I look toward Janey's year of being 11 with tempered hope.

Who is Janey, right now?  She's a beautiful girl.  She's getting taller and taller---I wouldn't be surprised if 11 is the year she overcomes me in height.  She's endlessly interesting---you can say that about her!  She is prone to extremes of emotion.  She goes from the highest of highs to the lowest of lows, sometimes within minutes.  She loves the things she loves---certain music, some movies and TV shows, some people.  When she doesn't like something, you know it.  Her smile is something amazing.  Her scream is, too.  She is intense.  She is a force.  She's my Janey.

Learning to be Janey's mother is a process that will never end, I'm sure, but I feel like I've made some big steps this year.  One of the biggest is a step of acceptance---acceptance that Janey is not going to change.  She is who she is, and it's us who have to change.  We can work helping her with some issues, we can try to teach her and modify her behavior, but in large, it's our job to modify.  We have the tools to do it.  She, for whatever reason, doesn't.

Parenting Janey is not something a book or an expert or anyone else can tell me how to do.  I need to figure it out myself, along with Tony and her brothers.  There have been some moments from this past year so tough that I never dreamt, in a million years, that I would have such moments in my life.  I picture a room in the ER full of people trying to subdue Janey after she bit me and started flinging everything in site.  I picture being told Janey's appendix had burst and she needed emergency surgery, right then.  I picture the moment I got the call from her school that her behavior was such they were calling an ambulance to take her to the hospital.  I picture the night we struggled all night to keep her oxygen mask on, as her oxygen leveled dropped to dangerous levels over and over.  After a year of such moments, we no longer are living a life that parenting books cover.

But hope shines through.  The simple phrase "I'll be so proud when you calm down" has worked some miracles lately.  In leaving it up to Janey to calm herself, in praising the end result and not worrying about the reasons for the outburst or feeling we must react in typical ways, she is learning to calm herself, and we are learning something I thought I already knew, to emphasize the positive.  And we are learning to have true delight in the little moments of joy Janey gives us.  Yesterday, she said "Chinese rice, please?", hoping for a take-out treat.  Tony said "Chinese rice?  That's an interesting idea!" and Janey repeated back, in her perfect imitation voice, "Chinese rice!  That's an interesting idea!" over and over, encouraged by our laughter.  We never did get the Chinese food, which she handled, but we had a lot of fun.

I think the biggest change in my mind lately has been in how I see Janey within the family.  We've all realized, from the times she was in the hospital, that she is a hugely vital part of who we are as a family.  Somehow, in the past, she was always separate in my mind.  I thought of it as having two "regular" kids and one "special" kid.  It's hard to admit that, but it's true.  Lately, I have gradually changed that thinking. I have three kids, three amazing kids.  They are my family.  We might not be quite like other families, but no two families are.  All three of them are equally special, not "special".  So, a very Happy Birthday to my Jane---and, an equally Happy Birthday to Freddy, who turns 18 today!  August 16th was a very busy day for me, 11 and 18 years ago today!  And all my love to them and to Tony and William.  You are a family any woman on earth would be proud to have.

Summertime, and the living is...not so hard

Yes, I wouldn't call the living easy, but it's closer to easy than it usually is with Janey.  Here's an account of a typical day this summer with Janey....

8 am ...  Wake up.  Janey has shown that left to make her our schedule, as I pretty much do with my kids in the summer, she is a night owl.  She's been staying up late and wanting to wake up late.  Actually, thinking about it, 8 am is not that late, but in our family of mainly larks, it is.  

8-9 am  Get ready for summer school.  I tell Janey it's a school day as soon as she wakes up, along with any other vital information about the day.  The problem with that is that she's always ready to move on to the next part of the day, so if it's a school day, she wants to be out waiting for the bus.  I delay her as long as possible, but we always wind up waiting for the bus long before it actually comes at 9.  Some days, there's screaming and arm biting as she gets tired of waiting but it's too late to go back in, but most days, it's been okay.  I sing some special bus waiting songs, mostly songs from Oklahoma, which for some reason I've sung each summer as we waited for the summer school bus.  I comment on each car or truck or bus that goes by, using my excited voice, which tends to keep Janey happy.  And then the bus arrives, and she hops on quite readily, to head off to the black hole of summer school.

9-3  I call it the black hole of summer school as I have little idea what she does there.  Her teacher does write now and then, and I know there's ABA and going in the sprinklers and breakfast and lunch, but of course Janey tells me nothing about her day, not a word.  That is a tough part of having a minimally verbal child.  Her life when not with me is a blank to me.  However, she seems happy!  I do dishes and laundry, and garden and play Scrabble on Facebook and try to make myself clean, and usually sneak in a nap.

3-4  The Waiting For Daddy Hour   Tony goes into work very early in the summer, so he can get home around 4.  Janey knows EXACTLY when he should be home.  I don't know if she can tell time somehow, or is just a very good judge of how long time chunks are.  But every day, about 3:45, she asks to "go see Daddy", which means walk down the street to meet Daddy coming home from the train.  If Daddy is late, or takes the train that comes in a different place, it's not very pretty.

4-6   This is Janey's favorite time of the day.  It's when Daddy does one of three things with her, sometimes all three.  He takes her for a ride in the car, a ride to nowhere, just cruising around and listening to mix CDs he has made for her.  She's become a huge fan of The Animals and The Monkees, and it's mostly those they listen to, with a few other songs thrown in---some Black Sabbath, some Beach Boys.  If they aren't riding in the car, they are cooking together.  Janey's favorite is "soup", which means kale or collard greens fried in oil and topped with hot sauce.  The third activity is a fire in a little fire pit Tony got.  We of course watch her extremely closely during this activity, but she adores looking at the fire.

6-9 (or whenever) This is video or TV time, combined with YouTube and iPad time, with occasional snack time or brother time thrown in.  Janey is in love especially with one movie this summer "The Little Mermaid 2:  Return to the Sea"  I am not sure what the appeal of it is, but we know it by heart.  There's also a lot of Word World and some Little Bear thrown in.

9 TV unplugged time, bed time.  We have to unplug the TV, as when Janey gets tired, she gets dissatisfied with shows after about a minute.  Most of the shows she likes are on Amazon Prime, which we have to use a password for, as otherwise, Janey can and has bought shows that aren't included in our membership.  So we are called upon to enter the password every time she gets tired fo a show, even if she just wants to watch a different episode of the same show.  We do let Janey have the iPad in bed.  It doesn't keep her awake, as once she's ready to sleep, she sleeps, instantly.  There is no drowsy period with her---she's wide awake or fast asleep.  Some nights, she's up until 10 or 11, but I'd say 9:30 is a good average.

So....we are hanging in there.  I left out a lot of times that there is screaming or arm biting, not just to make the days look better, but because these episodes are far shorter than usual lately.  We can edit them out of our days because I'd say the longest they have lasted all summer is half an hour in a row, which in the scheme of things, is very short.

I think we've been catering to Janey, to how she likes things, more than other summers.  I am sure this has to do with her time in the hospital.  We needed to keep her fed and keep her calm there, and once she first came home, at all costs.  It was a life or death matter, and I am not overstating things to say that.  And I think we realized, after doing that for a while, that we were all happier if Janey was happier.  We don't bother as much to say no to the little stuff.  If Janey needs a ride, if Janey wants to wait for the bus early, if Janey desires 5 viewings in a row of Little Mermaid 2, who cares?  If we are creating a monster...well, we aren't.  We are creating a happy girl, and one who because she is happy is making us happy.  We've done more family drives and had more of those spontaneous little good times than in years this summer.  I'm going to write more about some thoughts about what I'd call a new approach to life with Janey, but for now, I'm going to go meet her bus, cut up cheese into thin slices while she watches, the only way she likes cheese, put on a show and then change it if she needs it, and walk to meet Daddy.  And I'm glad to do it.

First week of summer school

I can't begin to say how happy I was to have Janey back in school, summer school.  I hope I don't sound like the world's worst mother saying that, but boy, do I love that school bus showing up and taking her off to school land for a while.  Luckily, I think Janey feels the same way.  She was more than ready to go to school again, after a long time off.  Her school year ended abruptly in May, with a bang and a burst---appendix, that is---and she was getting bored.

Summer school this year is only 4 days a week, so Janey was home today.  I forgot to explain to her in the morning why she wasn't at school.  She got angrier all day long, after about a week of model behavior, and finally, I realized that as happens so often, she had somehow counted the days and felt she should be in school.  She of course can't express this, and I feel stupid that I don't always remember to talk to her about it, especially after how Veterans Day last year affected her.   Around two, I finally said "I know you think there should be school today.  But summertime school is only 4 days a week.  On Fridays, you will be home with Mama"  Almost right away, she calmed down.

It's times like this I wish so much that Janey could communicate more.  I wish I knew how to unlock her voice, or if it is unlockable.  Her talking ebbs and flows, but overall, it never gets better.  She talks about as well as she did at three, and not as well as she did before her regression, when she was two.  Sometimes, that just doesn't make sense to me.  I know she knows more words than she did then.  She understands so much, and shows her understanding by following complex directions.  I can say something to her like "if you want to go in the car, go get your shoes and then bring me the phone so I can call Daddy"  She'll do all that with ease, and even directions with several more steps than that.  When she is in the mood and I give her pointing vocabulary tests, where she can pick from four pictures, she knows all kinds of words like "castle", "raccoon", "padlock", "helicopter"---to name a few I can remember.  She doesn't say them, but she knows them.  And she has not much trouble pronouncing words.  So why does this never translate into more talking?

For some kids like Janey, speech apps on the iPad help.  They don't, with Janey.  She hates them, every single time I've tried them or anyone else has.   Because the iPad talking is indeed talking, the same issues come up that do with verbal talking.  She either can't form the thoughts she has into words, to enter into a keyboard or say out loud, or she doesn't want to.  It seems sometimes like every word she says costs her a great deal of money, and she wants to save her money.  But this leaves us so often with no way to know what she wants, what is upsetting her, what is making her happy, even.

On days like this, when Janey and I are alone all day with nothing to do, I try hard to sort of shadow her, to try to figure out what she likes to do.  I sat with her for a long time today as she watched TV.  She knows a little how to work the Amazon Fire TV box that lets her watch shows on streaming services, but she needs help with the passcode sometimes (which we need, or she buys shows!)  Instead of trying to get a little done in between her need to change shows, I sat with her and immediately responded to anything she wanted done.  What she wanted was to watch the beginning of a certain episode of "Word World" over and over and over.  It was one where the word friends played baseball.  I have no idea what the appeal is, but there must be something in it she likes.  Usually, I try to encourage her to view new episodes of shows she likes, or new shows.  She resists this a great deal.  There must be some reason certain episodes appeal to her so much, and it's another mystery to add to the many she presents to us.

I tried at points today to get Janey to branch out with activities, but as she gets older, she seems to have less interest in a lot of things.  She used to love to be in the wading pool, but today, despite me giving her several new pool toys and trying my damnedest, she would stay in it only for ten minutes or so.  I tried reading to her over and over---she politely closed the books.  I pulled out her toys and knocked myself out trying to get her interested, and she gently took them and put them away.  What she likes lately is two things---watching videos and going places in the car while listening to music.  That is another reason I love having her go to school.  I know she's at least doing something different there.

I'm rambling on here a bit.  It's how my mind feels lately.  I feel out of new ideas about Janey, and fairly low on energy.  Her hospitalization took a lot out of her, and us.  I think for now we are so happy to have her healthy that we have a slightly different perspective on things than we did before. We are happy to have her here with us, and we want her to have a life she enjoys.  There is so much about her we don't understand and can't control, and the older she gets, the more likely it seems she is becoming the person she is going to be for life.  We need to find a way to let her live the best life she can while we also try to live the best lives we can.  That's going to be a challenge, but we are happy to have her with us to work on that challenge.

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.

Drink, Janey, Drink! Part 10

I most sincerely  hope part 10 is the last part of this saga written in the hospital.  Janey is ready to go home except for one thing---her drinking.  Talking with her surgeon on Friday night, she explained her eating, although not good, is not nearly as crucial as making sure she drinks enough.  You can go a long, long time without eating---Janey went about 10 days without anything but IV fluids---but you can't go long at all without drinking.  And Janey is drinking very little.  She did  better today.  She had about 20 sips of water, and quite a few times, she let Tony fill a straw with lemonade and then put it in her mouth.  All together, her fluid input by mouth was maybe 4 to 6 ounces, and that was with extreme effort.  That isn't enough.

Part of why Janey isn't drinking is the thrush in her mouth.  All the bacteria pretty much in her digestive system was killed by 2 weeks of three strong antibiotics.  So yeast was able to take over.  She has a terrible diaper yeast diaper rash and the thrush is also yeast.  It probably hurts her to drink, although she does seem able to eat things that aren't super easy to eat, like salami and onions.  Part of it might just be that she is sick of us trying to force liquids on her, and she is sick of the whole hospital routine.  I think if she were home, she'd drink more, but Tony isn't as sure, and I trust his judgement.  He's the best at getting her to eat and drink.

There was talk today about putting her on something to stimulate her appetite, but we have learned that not much seems to happen  in hospitals on the weekends.  Despite that, I am hoping tomorrow might be the day we go home, but it would more likely be Monday.

How do I feel about going home?  Mixed feelings.   I am scared, partly.  I'm scared because I now see how very much I don't know about Janey's health, and how quickly and scarily things can go downhill.  How will I know how serious things are, if a top-notch hospital first saw her very early Wednesday morning and didn't finally realize she had a burst appendix until Friday afternoon?  They know a lot more than I do, and they didn't see what was happening until things became hugely serious, leading to a recovery fraught with complications.  That is Janey.  She is hard to read, I know, and I am realizing it goes further than I ever even knew.

I am scared also because Janey is still tough in the ways she was before this all happened.  She has been, ironically, easier in a behavioral way during the whole ordeal than she has in years, but of course not for good reasons.  She has been in pain, on morphine a lot, out of it.  Now, as she starts to come back into herself, we are again seeing some self-biting, a little aggression.   And we have no more help, no more solutions, than we ever did.  In fact, we are more sure than ever there really isn't any help out there.  I talked to two separate hospital social workers and the hospital OT who is the autism specialist, and neither of them knew of a single source of respite or a single program that would help Janey.  I am satisfied, if that is the word, that none exist.  Except school, and school for Janey is over until maybe summer school.  There are two weeks left of school in Boston, but Janey will be home.  She is still too sick for school.

The good feelings about going home are, well, that I will get part of my life back.  I got into gardening in a big way this year.  The garden has been left almost all to its own accords for weeks now.  I hope I can salvage some of it.  Janey may be easier to entertain at home, or not.  I will be able to spend more time with my boys, and see the cats, and just not be in a hospital all the time.

In many ways, I feel like I haven't really even fully processed what has happened.  It feels unreal in a lot of ways.  Of all the things I worried about with Janey, the idea of her becoming seriously sick was right up with the last of them.  Life likes to do that to people, and sometimes when I am feeling sorry for myself, which has happened a bit more lately, it feels like it likes to do it to me in particular.  I don't like that feeling.  I don't like feeling sorry for myself.  I am working to get that out of my head.  But it sneaks back now and then.  Maybe I should just take a while to feel it, and then move on, because that is all I can do.  It's all all of us can do.