Janey in Maine---a tale of little sleep

Janey and I spent the last five days in Maine, where I am from.  We stayed with my parents.  I wanted very much to visit Maine for a little longer than my usual 2 or 3 day trip this summer, and I wanted Janey to get try some of the things that made summer special for me growing up.  So I decided to give it a try, just the two of us.  William is off to college and Freddy and Tony had to work.

How did it go?  Well----it was a mixed bag.  My parents did what they could to help, and I was glad Janey had time with them.  We did a lot of things---we went to a fair with lots of animals, we visited Pemaquid Point, which is a rocky seashore, my dear friend took us to have her mother meet Janey and to her camp, where Janey got to sit on a boat, as well as to an alpaca farm, and Janey got to run around outside a lot.  I put pictures on my Facebook page, and here is one of Janey on the rocks---I loved seeing her play on them, as that is what I did all summer long growing up.  But...it was tough.  Janey slept very, very poorly up there.  It was quiet, we had a nice bed in my parents' travel trailer, our own little place, she got plenty of exercise, but she didn't sleep.  And when she got overwhelmed, she screamed.

The sleep was so tough.  My parents watched Janey in the afternoons so I could have a nap, but nothing really makes up for a night with only 2 or 3 hours sleep.  I don't get to sleep quickly, especially when I am thinking I'm going to be awakened, so once I did go to bed, I lay there for a while, finally drifted off, and it would feel like a few moments rest and BAM---Janey was awake.  One night I tried waiting a while when she started crying to go to her, and she said in a very sad voice "I sprang to my feet to see what was the matter!" a quote from The Night Before Christmas and a pointed jab at me and what I was supposed to do when she woke up.  Generally, she was cheerful in the night, but not sleepy.  She walked around, recited things, poked me and just plain stayed up, usually from 2 am on.  My husband Tony and I trade off night duties at home, and Janey usually sleeps better than that.  She was in a place she wasn't used to, she didn't have Daddy around or familiar things to comfort her when she woke up---I can understand the not sleeping.  But I felt like a zombie in the daytime.

And the screaming...The screaming hasn't been as bad as it used to be most of this summer.  It's been a good summer.  And a lot of the time in Maine, Janey was fairly happy.  But when she broke down, it was badly.  At one point, when my parents were letting me nap and my father was taking a walk down their dirt road with Janey, she woke me up with her screaming, from quite a bit down the road and through the walls of the camper I was sleeping in.  I worried the neighbors, who don't know Janey, would think something horrible was going on.  My father did his level best with her, but when she is like that, it's almost impossible to calm her.  I went and got her and lay down with her, and finally, she calmed.  For a bit.  There were a few other incidents like this, always it seemed right at a time when I desperately wanted her to be happy, like when she met my friend's mother.

I'm glad I took the trip.  It was a big deal to me to be able to do it.  I have never taken Janey away from home for even one night on my own, and she has never stayed at anyone's house for more than a night.  Her having such success at camp gave me the courage to try it.  It was real life, not a camp where everything is geared people with special needs, and I need to keep that in mind.  She did the best she could, and we made it home in one piece, and she got to experience a lot of things she wouldn't have otherwise, and we both got time with my parents.  I'm going to catch up on my sleep the next few days, thanks to a rested Tony.  And school starts Thursday.  Or, as I should put it SCHOOL STARTS THURSDAY!!!!!

Reflections on Janey's week at camp

We picked up Janey early this morning from her week at Camp Fatima.  What an amazing place it is!  We were truly blown away by the kindness and generosity of the so many people that make their Exceptional Citizens Week possible.  Her counselor, Dawn, teaches autistic kids during the school year, and then takes a whole week of her year to be with an autistic child at camp, and she is just one of the hundreds of volunteers that make the camp possible.  Janey went on boat rides, rode horses, sang in the church choir, went to a dance, shot a rifle, did arts and crafts, had meals served in the dining hall by teenage boy waiters, slept in a cabin, went to a campfire, had her nails done in the camp salon, hung out and ran around with her camp friends---she had a true week of camp.  And we had a week of true respite.

We got great reports from camp.  Janey was very happy there.  Her counselor figured out she does have a tough time every day from about 3-5 pm.  This almost made me feel good to hear, as that is her tough time at home too, and it made me feel less like I'm doing something wrong during that time and more like that's just Janey.  But the rest of the time, she was nearly all happy.  I had guessed she might be.  Janey is a natural camp-goer.  She is in so many ways the opposite of me as a child.  I was a natural get-homesick-and-go-home-early camper.  Camp was everything I didn't like then and still don't like now---sports, lots of togetherness, not a lot of downtime, a place for extroverts.  Janey is not like me.  She loves to be active and busy.  She is not shy or introverted.  That was one big reflection I had on this week.  A lot of Janey isn't her autism.  It's just her, who she is and I think who she would be with the autism or not.  I need to work harder to give her the kind of recreation and activities she craves.

At home, we got a very lot of sleep and rest, and were able to eat out a lot, go on some day trips and watch a ton of "Dexter" on TV---all things we don't do with Janey home. We had a lot of fun.  But I missed Janey very much---to be completely honest, much more than I expected to.  I knew I would miss her, but because we have never, ever before had a week of respite, to say nothing of really a full day of respite, I thought the missing would be overwhelmed by the freedom.  I loved the freedom, but I missed her so, so much.  Somehow, without her, we weren't quite operating at our best as a family.  We argued more.  The boys fought more. We got irritated at smaller things---bad drivers, bad pizza, forgotten keys.
We had a great time, but it somehow felt like a great time with a piece missing.

We eased Janey back into our regular life by stopping on the way home at a friend's camp (camp in the Maine meaning, a summer house) on a lake.  We had a great boat ride and Janey had time to run around in the beautiful yard.  Then the long drive home, and re-entry.  That was a little tough.  Janey ran through all the things she most likes to do at home quickly---some iPad time, a video, asking Daddy to cook things, ordering us to snuggle her on the bed, some YouTube---and then it seemed to hit her and she melted down some.  She was tired and I am sure she was missing camp.

What did I learn from this week?  I learned Janey can thrive away from me.  I learned I need to find a way to get more sleep, because sleeping through the night felt amazing.  I learned I have to find more ways for Janey to be active physically.  I learned that there are many incredible people out there who give of their own time for families like ours.  I learned, as I keep learning in life, that our children are their own people.  They like different things than we do.  They truly do deserve, and enjoy, a life that is at times apart from us.  But I also learned that our family doesn't feel complete without Janey.  She is part of us.  At times, when Janey is very tough, it has felt like she has somehow taken away the family life we were supposed to have, but I know now that our family without her isn't our family.  It's a different family.  We need Janey, maybe even more than she needs us.

Janey is at camp!

I haven't written at all here until now about Janey going to camp.  I think that was because I feared a jinx, or thought I still might decide not to send her at the last moment, or something else would happen to have it all fall through.  But she is there now!

The camp is called Camp Fatima.  It's in New Hampshire.  They have a week every year called Exceptional Citizens week, and during that week, they accept campers with all types of disabilities, campers that would not be able to go to most any other camp.  Here's a website about the camp.  It is run by the Catholic Church, but you don't have to be Catholic to go (we are not).  From everything I've heard, it's an amazing, amazing place.  It's totally run by volunteers, many who come back year after year after year, and each camper has a counselor assigned just to them.  There is boating, swimming, horseback riding, archery, tennis, arts and crafts and more.  Every year the week has a theme, and this year it's "The Sound of Music", which was made for Janey!  They perform a little bit of the musical every night at dinner. The camp is totally free, payed for by donations.  I heard about the camp years ago, from teachers and therapists at Janey's old school, many of whom volunteer there.  They encouraged me very much to apply, although I was hesitant, but I finally did.

Taking Janey up today was a bit of a mixed bag!  Yesterday was her birthday, which was also a mixed bag.  She did very well in the morning, but the excitement got to her by the afternoon (it's also her brother's birthday, and although I try hard to keep it low key, she almost always has a hard time with it).  She was AWFUL in the afternoon---biting and screaming and just completely wild.  But by evening, she was happier, and she woke up in a lovely mood.  The ride to camp (about 2 hours) went well!  She was cheerful almost the whole way.  We took both boys, and that helps, as she likes being around her brothers.

When we got to camp, it was a chaotic scene at first, as a check-in like that always is!  We had to wait in a line in the car a bit, and then went to wait to hand in Janey's medication.  Janey started to lose it, completely.  She started screaming and biting herself, and actually did bite me.  At that point I was talking to a camp worker I thought was a check-in person, who was wonderfully calm about how Janey was acting, as was almost everyone!  People were clapping and yelling "Welcome to camp!" and acting like she was perfectly normal.  That was great.  I had Tony wait in the line for us, and we went over to her cabin, and showed her her bunk (the counselor sleeps right above her!) and I figured out that the woman I was talking to, Dawn, was actually Janey's counselor!  That was GREAT news, as she is a teacher in an autism classroom and has worked with autistic kids her whole career!  It's amazing to me that she takes a whole week a year to volunteer at the camp.  I told her that what she had just seen was about as bad as it gets with Janey, and it's usually a lot better than that, and indeed, Janey had already calmed down.  She liked seeing her bunk and cabin, she had some juice, and we went outside.  The picture is Janey with her cabin in the background.

I loved the questions Dawn asked---all the things that are necessary to know about Janey!  She said they pretty much have the kids do the activities they want, so if Janey likes the boats, she can spend a lot of time on the boats!  She said she will call for sure if things get out of control, but she doesn't see that happening.

We left after not that long!  It's always better with Janey to go while the going is good, and she doesn't like transitions, so we knew she'd not want us hanging around!  She happily high-fived us all goodbye and let Tony and me kiss her, and we were on our way.  We pick her up Saturday morning.

Now---almost a week to fill!  I miss her already, but I have to admit---it's going to be incredible in a lot of ways to have a week of respite.  We have NEVER had anything CLOSE to that.  We've never been away from Janey for more than one night together (once only for the one night, even!) and to have 6 nights---we aren't going to know what to do with ourselves!  On the way home, we all found ourselves getting tense when things happened that would upset Janey---bad traffic, loud noises, music stopping---it was very hard to picture that she just wasn't with us.  We stopped at a restaurant even though we weren't that hungry, just because we could!  Tony has the week off, and we plan a few day trips and maybe one night in a hotel in the city with the boys.

I am of course going to be nervous all week, waiting for a call to say that we need to come get Janey, but the truth is, it wouldn't matter where in the world she was, I would still feel that way.  I think she's in one of the best possible places she could be, and I am extremely, extremely grateful to the camp, to Dawn, and to all the people that encouraged me so much to apply!

Sixteen non-sentimental autism truths

No trips to Holland here.  No Hallmark moments.  No miracles.  No breakthroughs.  No shiny rainbow sparkly sentiments.  Just the truth (as I see it)


1.  You can get by on very, very little sleep if you have to.  Coffee helps.

2.  Don't worry too much about what your kids eat.  I can say from experience kids can eat food off the floor, bites of paper towels, duck sauce, pickle juice like a drink and random car crumbs---all in the blink of an eye when you turn your head---and be just fine.

3.  Kids' videos are boring.  Even the better ones are boring after you see them 100 times or so.

4.  You can learn to clean up "toileting accidents", the kind that would make most people sick for days, with barely a thought after doing it for five or six years.

5.  Don't get too attached to any of your kid's clothes.  They will be chewed on, stained up and ruined very soon.

6.  The things you dread the most will often turn out to be the easiest to deal with.  The things you never thought would be a problem will very often become huge disasters.

7.  People like to stare.  They love to look at any child acting odd.  They don't try to hide it.

8.  There will be a point at some time in your life when you will feel like punching someone for talking about their child's C in math or failure to make the elite sports team.

9.  You will argue with your spouse about petty, stupid, meaningless things, and that argument will turn into a screaming match.  You'll do this because you can't argue with your autistic child, and goll dern it, you need to argue.

10.  You will have very little social life as a family.  People don't invite you back when your child screamed for hours last time you visited.

11.  You will look forward to the first day of school like 10 Christmases combined.

12.  You will have daydreams of your child asking for every toy they see at ToyrRUs, because that involves talking and having typical child wants and desires.

13.  You will at one time or another buy something overly expensive (a therapy toy, an app, a supplement, a piece of electronics equipment) because you've read about the wonders it does for autistic kids.  You will wish that money back.

14.  You will eagerly analyze anything in your child's backpack for the slightest hint of what they did all day at school.  No matter how much information your child's teacher gives you, it will not add up to a tenth of what a typical kid tells you about their day, even if the typical kid is a surly teenager.

15.  Birthdays will be tough.  People asking you what grade your child is in will be tough.  Seeing what other kids the same age as your child can do will be tough.  Heck, a lot of things will be tough.

16.  You will delight in accomplishments that most parents wouldn't even notice.  You will be in tears of happiness over words or gestures or smiles that typical parents would take for granted.  You will have moments when you realize that the child you have is perfect.  Those moments will be fleeting, but they will be so very, very sweet.

A positive dental surgery story!

Janey had dental surgery on Thursday. You don't hear a lot of positive dental surgery stories, I don't think, but I've got one to tell!

The background---Janey has gotten dental care at school over the years, a service for kids without dental insurance, like ourselves!  Gradually, though, it became harder for her to be treated at school, because, well, she's autistic and she didn't cooperate.  When we went to Boston Medical Center's autism center, they recommended Franciscan Children's Hospital for dental care for her.  We are lucky in Boston to have a few children's hospitals.  The big one, Boston Children's Hospital, is certainly the place to go for a severe medical emergency, but it has some issues, and is not a terribly autism-friendly place.  Franciscans caters especially to children with special needs.  It's not a flashy place---it looks as I would bet a lot of hospitals looked in the 40s or 50s, but we decided to give it a try.  They saw Janey for a dental consult, and we were very happy with them for that.  It took 5 people to get Janey in a papoose hold so they could look well at her teeth, and they did it in such a kind and caring way, both to Janey and to us.  They found she had two cavities and also a broken tooth.  We have no idea how her tooth got broken, but guess that it might have been when she was having a tantrum and biting things. It was a molar and broken in the back, and we never saw it.  She never seemed in pain from it, and indeed you could press right on it and it didn't seem to bother her, but it needed to be fixed.  She also needed good x-rays, which weren't going to happen when she was awake, so they decided she needed dental surgery.

It took a few months to get all the approvals and doctor's visits and so to arrange the surgery.  We had to pre-pay for the dental part of it, which was a financial hit, but actually so far not as much of one as we had feared.  Still, a chunk of change, but it had to be done.  Our regular health insurance will cover the surgery part, minus of course our 15% co-pay (and let me say here, if anyone thinks federal employees have some great kind of health insurance, think again.  They don't)  But that aside, everything got in place and we got a date for the surgery.

Tony and I were both nervous out of our minds about the surgery.  Mainly, we were worried about not being able to feed Janey after midnight, and about how she would react to all of it.  We could picture a nightmare.  We didn't get one.

We fed Janey all we could before the midnight deadline, and kept her up as much as we could so she would sleep from midnight on without wanting food or water.  We locked up all food in the house, as she tends to get up and forage.  The first nice thing the hospital did was give us an early surgery.  We had to be there at 6:30 am for a 7:30 surgery.  Janey slept well, we woke her and drove her there, and she only ever asked for food a few times---chips, as she associates going to the doctor with chips.

As soon as we got to the hospital, we were greeted at the front desk, checked in quickly, and the front desk guy himself walked us to where the surgery waiting room was. It was a nice big open room, and Janey loved running around.  The picture is of her in the waiting room, all smiles.  We were called in quickly.  The prep for the surgery was handled SO well.  Everyone was kind and patient with Janey.  They offered us a choice as to whether to give her a sedative before the surgery, to relax her, and we decided to.  It was a drink in a cup, which Janey didn't want to drink, so Tony asked if he could give it to her by syringe, as we do with her medication.  They said sure, and she took it with ease that way.  They let us walk into the surgery room with her.  The only moment she got upset was when they put a mask on her, and as Tony and I reflected, you almost want your kid to resist being made unconscious!  She screamed out "Daddy!" and Tony comforted her, and they held the mask on her as she struggled a bit, and then she was asleep.  They waited until then to put in an IV (after we had left the room!)

The surgery took about 90 minutes.  When it was over, the dentist/surgeon came and showed us all the x-rays, and said they hadn't found any extra problems, and that her teeth overall looked very good and clean, which made us very happy.  We've tried extra hard over the years to be good with brushing her teeth, and she actually does like her teeth brushed, unlike a lot of kids with autism.  She does have what they call "delayed dentation".  She is just starting to get her 6 year molars.  I don't know if that has anything to do with her autism, or if it's just a genetic thing.  When I was in college, a dentist told me I was just starting to get my 12 year molars, so that might be just something she got from me!

Janey woke up quite well from the anesthesia.  She was sleepy, but we got her up, and there was a true minimum of crying, less than on a typical day! The nurse with us was so sweet.  Everyone there seemed focused on making sure Janey felt comfortable.  For example, when she struggled with the automatic blood pressure machine, they got out a non-automatic one, let her play with it a bit, and then used that instead to make it quicker.  The nurse walked with us to our car when Janey was ready to leave.

Janey was a bit sleepy all day after the surgery, but nothing extreme at all.  They had given her long acting pain medication during the surgery, and we gave her Tylenol a few times, and we didn't see any signs of pain at all from her.  By the next day, it was like the whole thing hadn't happened.

I tell this long story in order to give credit to the hospital, and to all the little things they did that made this work---sedation before the mash, IV after the mask, long term pain medication, calm personal nursing and doctor care, a nice waiting room, understanding of Janey's fears, quickly allowing us to make changes like the syringe when necessary---I felt the day was a great example of autism-friendly medical care.

Franciscans doesn't have a flashy look or reputation, but it shows what we've seen quite a few times with Janey.  Sometimes, it's better to go with a hospital (or a school, or a store, or a therapist) that is used to dealing with children who are in need of understanding and caring just as much as they are in need of the latest shiny equipment.

What does Janey think about?

Of course, we never really know what anyone else thinks about.  But with Janey, I have no inkling at all.  She never refers to past events.  She never tells me what she does when she's not with me.  She has never told me a dream.  She's never told me about a disappointment she felt.  She's never said what she hopes the future holds.  She's never even told me the little things, like what her favorite color is.  Her mind is a mystery to me.

I get glimpses of Janey's mind only by her telling me her immediate wants, and even those are limited to a very few categories---ones relating to food, videos, going outside or in the car or wanting someone to lie down with her or go away from lying down with her.  I know what foods she likes and what movies she likes.  But I don't know if she likes school.  I don't know if she likes certain kids her in class better than others.  I don't know if she wishes she could talk more, if she wishes she could read.  I have no idea.

I often look at Janey's face, trying to figure out what is inside, in her mind.  So often, her face doesn't let those secrets out.  She so often has what I think of as her reserved look.  Some people call it an autistic look, and indeed, it's a look that I think is common with a lot of autistic kids.    It's a guarded look, a look that seems to be designed to keep her safe from being asked to do things she doesn't want to do, safe from well-meant but invasive demands--- "Look at me!  Tell me with words what you want!  Tell me about school!  Answer me!"  It seems to be a way she retreats into herself, closes herself up.  Maybe autism is the ultimate way of wanting privacy---she keeps her counsel.  But oh, how I wish she would, or she could, let me know what she is thinking, even just a little.

Why just at home?

Yesterday, I got a call from Janey's school to pick her up, as she was sick to her stomach---needing repeated pull-up changes.  I can honestly say that's the first time Janey has been that particular kind of sick in her whole life.  I am not sure what's up.  She seems better today, but to not infect other kids, I'm keeping her home.

While picking her up, I got to talk a little to one of the supervisors of the summer program, who I've known for a while.  She told me something that surprised me---that Janey has not been screaming or crying almost at all at school this summer.  In fact, she said the day before Janey had screamed once, and surprised the ABA specialist that was working with her.  They told her that screaming was something Janey had certainly been known to do, but it wasn't a behavior she had been showing at school during the summer at all.

Well, that set me back a bit.  Of course, I was very glad Janey had been happy at school, but at home, almost every day, she gets off the bus and screams and cries for a LONG time---often two hours.  Nothing we can do seems to help.  I had wondered if she was hating summer school and reacting to that, but that doesn't sound like the case.  So why at home?

I have a couple ideas.  I don't think she hates being home.  Much of the weekend, and later in the evenings, after the screaming is done, she's very happy.  I think part of it is that she holds herself together at school and relaxes at home, and lets out her tension.  My sister used to do this almost every day, I remember.  She'd be perfect at school, but would come home and within minutes would get upset by something, and would fall apart.  I think it's something a lot of kids do.  Another part of it might be that she really does like school a lot.  At school, she often gets intense one-on-one attention.  She has people working with her, a busy schedule, outdoor fun---things are kept moving.  At home, as much as we try, we can't quite give her that intense attention.  The boys need rides, we need to clean and cook and sometimes sleep.  Although we are with her constantly, we aren't interacting with her in the intense way that school provides.  And although I think she likes some down time, it's a transition every day, I am sure.

I've realized something interesting lately.  How I react to Janey's crying affects how long it last almost not at all.  I can do everything in my power to stop her from crying, to keep her happy, or I can do nothing, and the crying lasts about the same amount of time.  It's like she needs a certain amount of time to scream and cry, and once that time is over, she stops, no matter what I do.  I've taken lately to saying to her when she starts "You seem very sad.  I am right here if you need anything to help you feel better.  I'll wait for you to ask me for what you need".  Then I just wait.  I stay near her, but I don't frantically try to help.  I do make sure first she's had enough to drink and eat, that she doesn't need a change, that nothing I can see is hurting her.  Then I wait.  If she asks me for something (usually, it's "snuggle on the bed!"), I do as she asks if I can, but I don't desperately try to help as I used to.  Basically, I've realized it's totally useless to do so.  Last night was a good example.  Tony was with Janey, and Freddy and I were watching the last episode of Star Trek The Next Generation, something we had been eager to do.  Janey started screaming.  My impulse was to turn off the TV and put all my attention and energy into trying to make her happy.  But Tony was with her, and I really wanted to see the show, and most of all, I knew it wouldn't help.  Janey screamed for about half an hour, and then stopped and was as happy as a clam.  And I got to spend time with Freddy.

Now for something completely different and off-topic.  If anyone is interested in seeing Janey's very cool brothers, here's a link to a music video they made together, featuring all original songs written by William, with acting by both of them and film editing by Freddy!  I have three very cool kids!   VIDEO LINK!