Saturday, August 31, 2013

Night Waking without Day Sleeping

For 5 out of the last 6 nights, Janey has been awake most of the night.  The problem is never falling asleep.  She goes to sleep easily, between 7:30 and 8:30.  But then, around 1 or 2, she wakes up.  She wakes up completely, ready to rumble.  She asks for food, videos, a bath, "go to the ice cream store", whatever.  She seems to have no idea it's night.  Nothing, I mean nothing, we can do gets her back to sleep.  And so we are awake, at least one of us.  We try to take turns, so that Tony and I both get some sleep.

I've of course researched this and talked about this before.  I've gotten lots of helpful ideas this way, or at least helpful in theory.

1.  Create a safe space, put Janey in there, don't let her out, so you can sleep anyway.

Our apartment is small, but with one son in college and the other mostly sleeping on the 3rd floor of our house (the apartment is small, but the overall house is big, and we are on the 1st floor), we do have spare rooms.  However, putting Janey in one of them alone is not an option, because of her self-injurious behavior.  If she's upset, and being alone in a room with us not answering her whims will make her upset in a short amount of time, she bites and scratches herself.  No matter how empty the room is, she has the tools to hurt herself, and that is not something we can live with.

2.  Melatonin

Tried it.  No effect, none.  Nothing.  Maybe it works better to get kids to sleep at night, and not for night waking, or maybe, like with a lot of medications, Janey has a very high tolerance.

3.  Other medications

Janey's new medication, Tenex, for the first few days seriously made her tired.  In the daytime.  But even then, not at night much.  After a couple days, it doesn't seem to be making her tired at all, which is very good news for the day, as it's helping otherwise, but very bad news for the night.  Our pediatrician said we could give Janey Benedryl when she was just not sleeping.  One Benedryl and I'm out like a light, but again---no effect on Janey.  None.

4.  Completely giving Janey no attention, besides just saying "time to sleep" and lying down with her.

Yeah.  Tried that one a million times.  Janey is not terribly dependent on our encouragement through attention to keep asking us for what she wants.  We can say "time to sleep", turn off all the lights, and still, a hundred times, a thousand times, she says "Kipper?  Ice Cream?  Bacon?  TV on?  Go in the car?  Backyard?"  If we don't answer, she starts screaming, assuming we didn't hear.  Or she cries.  Or hits us.  Believe me, we've tried the no response bit for hours on end.  No effect.

5.  Giving in and staying up with her, assuming she'll sleep when she's tired

She likes that one, but the "sleep when she's tired" part never arrives.  It just becomes a daytime routine at night---videos, food, jumping up and down---and she usually winds up staying up all night, from 2 on.  And then all day, until 8 the next night.  She just seems to be one of those people who doesn't require a great deal of sleep.

6.  Punishments

Like what?  No punishment that we could actually use has any effect on Janey.  Time out?  That requires us to sit right there and monitor her, which she has learned to tolerate until the time out ends, at which whatever behavior started it starts right up again.  No videos?  Sure.  She'll just scream, cry, bit herself, freak out, keep us up all night.  That's our most common try---saying to her "If you are going to be awake, no food.  No videos.  No entertainment"  She doesn't give up.  I think this has to do with her weak sense of what is night and what is day.  Sure, she thinks, we are being resistant, but eventually it's somehow that magical time when you get breakfast again, and if she keeps asking and screaming OVER and OVER and OVER, that time will arrive.

7.  Rewards

Again, like what?  Stickers on a chart to get a reward?  Janey has zero understanding of this.  Promises if she will stay in bed?  She has no real wants except immediate things, and she doesn't understand long term promises, like things that will happen in a few hours.  We could say "If you stay in bed and let Mama and Daddy sleep, we will get you ice cream in the morning"  She doesn't get what morning is, she doesn't make the connection between doing something now and getting something later.

I could go on and on.  I don't want to be defeatist.  I very badly want a solution here.  I have a lot of hope that once school starts, her sleep will improve.  The night waking still occurs during the school year, but much less.  And I realize this might just be a case of her not needing the sleep we do.  Maybe, I hope, in 10 years or something, she'll be able to be left alone awake while we sleep.  I have to admit, though, when we are walking around like zombies day after day from not sleeping, that thought isn't a lot of comfort.

But...the days are better lately.  And that is great.  If we were only awake to enjoy it.

Thursday, August 29, 2013

The trip to Maine---a (mostly) success story!

When the boys were little, we did a lot of little getaway trips.  Not a lot of long vacations to real destinations, but quite of a lot of trips where we'd find a cheap hotel deal and spend a few days in a new location, visiting friends or family.  But for the last five years, we have taken no trips like that.  None.  We have not gone away as a family in that time for more than a few quick, close overnight twice.  We haven't been more than 100 miles from home as a family, or gone more than one night.  About a month ago, when Janey was doing pretty well, I decided I very much wanted to try a little trip.  I grew up in Maine, and Maine in the summer is a special place.  I wanted Janey to at least have a day, or even an afternoon, playing outside in the Maine summer.  My parents live in Maine, and I set my goal at a day at their house.  I reserved a hotel about half an hour from them (because close hotels, near the coast, are out of our price range in the summer), for two nights, and set aside 3 days for the trip.  I wanted us to have a full day for travel both ways, although it's about a 4 hour drive, so that if we needed to stop 50 times, we could.  I wanted to have very, very few plans, so that our main focus could be on letting Janey relax and hopefully enjoy the trip.  I felt like if this went well, and she saw that going away could be fun, it would be a good start to expanding our horizons a little.  But if it didn't, it might be the end of that part of our lives for a good long time.

Then came the hell weeks, which you've probably read about here.  I thought over and over about cancelling the reservations.  I thought there was no way that this would work, that her crying would get us kicked out of the hotel, that she would destroy my parents' house, that her behavior in the car would make us unable to drive.  However, once the new medication had shown a little promise, I thought we might as well give it a try after all.

Well, I'd call it a modest success.  The ride up was quite good.  Janey didn't cry AT ALL until the last 5 miles or so!  She did sleep a lot, still tired from the medication at that point, and she wasn't terribly smiley or happy, but she was not crying.  Here's a picture of her at a rest stop...
having some ice cream.  We made it to the hotel well before I ever thought we would---we only stopped about 3 times, as much for us as for Janey.  I was worried how Janey would react to the hotel, but we kept talking up how we were going to go swimming as soon as we got there, and we did...
The pool was only 4 feet deep, was outside and full of bugs and very cold, but we swam!  Janey was fairly happy to swim---not as excited as that sometimes makes her, but happy.  We spent the rest of that day in the hotel room, just hanging out (although I got to go out to dinner with my dear friend Julie while the rest hung out!).  Tony got to watch baseball with Freddy (we don't have cable at home to see it) and Janey got to go about 5 times to the "chips machine", the vending machine, and get chips.  I figured that if that's what meant vacation to her, then getting a lot of chips (which she wasn't really so much into eating, just getting!) was fine.  She also enjoyed pushing the buttons on the elevator.  She didn't sleep at all well that night, though, probably from sleeping in the car a lot, but she wasn't screaming---just wandering the room and enjoying some cable.

The next day, we went to the hotel breakfast and then to my parents' house, and as I had hoped, it was a beautiful day and Janey had a wonderful time outside.  She was able to wander around their big, wooded yard and to walk down their dirt road, and to pick wildflowers and see all the bugs and just enjoy that smell of Maine in the summer.   Here's a few pictures...

I wish she had been more excited or happier---she seemed subdued, but she wasn't crying, mostly, and I think she was partly subdued just taking it all in.  For a girl that loves outdoors, having that much of it just to look at and walk around in was probably almost overwhelming.  She liked a few of the toys my mother had saved for her---here's her enjoying a Clifford book on the deck...
and overall, I felt very happy that I was able to give her that day, a tiny piece of my summers in Maine.  As soon as we were all getting a little tired, we left, while everyone was still in a good mood.  We went back to the hotel, and lucky me got to AGAIN go out to dinner with my friend---another great part of the trip, getting some time to just talk and laugh and be silly with a dear friend!  Janey slept better that night.

Today when Janey woke up, I saw a Janey I hadn't seen in quite a while, and was very happy to see back---a smiling, laughing, energetic, funny girl.  She was in one of the best moods of the summer---singing her song parodies, thrilled about anything we were doing, even little things like going to the hotel breakfast...
just being the Janey in what we call her "precious" mood---one of the times I can't possible imagine enjoying her more.  They are rare, but I had worried the medication might take them away, make her quieter and more subdued all the time.  I love my lively girl when she's a happy lively girl!  

The drive home wasn't fantastic.  I think Janey had had enough of driving, or maybe she was realizing the "jolly holiday" (a term she picked out of a Mary Poppins sing-a-long song to define our trip) was over.  She cried a fair amount, and we stopped less---perhaps we should have stopped more, but I think we thought by that time just getting home would be best.  Here's a picture from one stop, with a moose...
Janey wasn't in the best mood, but she agreed to pose!  

So I'd say overall, a success.  I wish Janey had been happier more of the time, not just not crying but actually happy, but there were certainly happy times, and we made it!  I was able to get some time out, and my parents were able to see Janey and Freddy (this also marked our first family trip without William, as he is at college, and incidentally having a better time than he ever realized it was possible to have, by his reports).  I think we'll try to do it again fairly soon.  It felt good to be a little back on the road again.

Monday, August 26, 2013

Trying

Last week was extremely tough with Janey, peaking on Wednesday, which would been in the running for one of the worst days for her and for us ever.  She was in a fury all day.  She lunged at me over and over, scratched herself badly, cried without stopping----it was incredibly tough.  We went for a while to my friend Maryellen's house, which Janey usually loves, but this time, she was just as unhappy there, and extended her attempts to bite to Maryellen.  The evening featured both boys needing rides from places far away, and Tony took her on one of the rides, even though that made it a ride straight through hell, because he could see I was a zombie by that point.  Then I watched her, and she thankfully finally fell asleep at about 7:15.

Tony had called her psychiatrist that day, and thankfully he was able to see us Thursday at 10 am, on an emergency basis.  Usually Tony takes Janey to see him on his own, but I went this time with them.  I had a feeling what would happen, and it did.  He suggested we try a medication I was resistant to in the past.  It's a medication that is often used for ADHD, a high blood pressure medication that also works to slow down the system a little, as he put it, to "give her a minute to think before she acts"  The main side effect, he said, was tiredness.  At this point, tiredness didn't sound like something bad.

Now I'll stop her and answer the critics that are in my head, because they speak to me louder than anyone else does.  Why give Janey medication?  She already takes some, why give her more?  Why not try something else?  Aren't I doing some kind of experiment with her, using drugs at such a young age?  Why can't I find a behavioral way to manage her behavior?  And the underlying voice, the mean one, saying "What kind of mother are you, not to be able to handle your own little girl and to just turn to drugs to calm her down?"  Well, voices of dissent, I invite you to read a few entries of this blog written when Janey is at her worst.  This isn't annoying behavior.  This is life-threatening behavior.  If unchecked, I think Janey could honestly seriously injure herself, or others.  At the very least, she isn't learning or thriving or having fun or being really anything a child should be able to be when she is hysterical, furious, lashing out, crying, not sleeping, for days on end.  The most powerful argument I told myself---what if all of this was part of a "strictly medical" problem?  What if I decided, because of my own beliefs, to not get her help with that medical problem?  I think few people would support that.  In fact, if that failure to get her help resulted in some dire end, I could be in major trouble for NOT getting her help.  Why is it that because autism and the mental health issues it sometimes creates are not considered "medical" problems, getting medication to help them is often seen as giving up, as bad?  I don't know, when I think of it that way.

Anyway, the medication has had mixed results.  The very first day she took it, Friday, the result was sleep.  Sleep most all day.  I sat next to her all day, making sure she was okay otherwise.  I think she'd been operating on a huge sleep deficit---I know we were.  She slept Friday night fairly well too, and Saturday, slept much less (I had read the tiredness usually wears off quickly) and was generally in a better mood.  There were still outbursts, but they were muted.  Sunday, yesterday, was the huge big day for us.  Tony and I took William to college (and a huge shoutout to him here!  My baby boy, in college!) and Freddy watched Janey for eight hours.  If Janey had not been a little better due to the medicine, I would not have left Janey with him, and I would have missed seeing William off, as I've missed so many milestones in his life.  I'm very glad I was able to be with him.  And Freddy's report on Janey?  She was "great".  She did sleep a couple hours, but those hours were made up for last night, when she was up from pretty much 1 am on.  So not such a great result from the medication in terms of regulating her sleep.  As I write now, she's been napping about an hour also.

I'm not sure if this medication is right long term, but we had to try it.  The psychiatrist mentioned that in the mid-term future, we will probably be looking at mood stablelizers for her.  I know what that means.  I know children are no longer diagnosed as bi-polar, but if they were, I know Janey would be so diagnosed.  Her cyclical highs and lows are very, very, very pronounced.  I know, from a cousin and a friend's husband that are/were bipolar, or manic-depressive, that it's one of the closest to being purely medical of the psychiatric diseases.  It is not treatment, well anyway, without medication, from what I have seen (and they were both severe, severe cases)  If Janey is bipolar in addition to her other challenges, I will welcome medication  at the age that becomes appropriate.

And so we go on.  We are trying.  I don't know if I am doing the right thing or not.  I never do.  I only know I have to try, to try to help Janey live a decent and meaningful life, and to stay alive myself as I do so.

Wednesday, August 21, 2013

Everything magnified by ten

I'm trying to think of a way to describe Janey's behavior this week, and the title of this post is what I came up with.  She's not doing anything she hasn't before, but everything is done in a bigger way---louder screaming, more violent reactions to being told no, more hysterical laughter, bigger acts of destroying things around the house, more night waking----it's like she just decided to kick it all up a notch.  It's been pretty tough, to put it mildly.

It's hard because this is probably the most unstructured week of our year.  No summer school, regular school doesn't start until September 4th (and believe me, that date is circled in red on my calendar), Tony is at work, we are just hanging out.  And I had planned to try very hard to take Janey places, to keep her occupied, but when she is acting the way she has been, I can't do it alone.  Literally.  I can't handle it alone when she runs away from me, when she decides she wants her clothes off, when she starts screaming and lunging to bite me, when she scratches herself until she draws blood---it's not a one person job.  Even taking her in the back yard is getting tougher, as she suddenly gets unhappy there and freaks out, and does the clothes off routine, which she knows means we have to go inside.  I'm starting to wonder if she's using it as a way to tell me she wants to go inside, instead of just saying that, which she can say easily, but what am I supposed to do if she is?  Let her stay outside without clothes?  No.

Yesterday we did get out, by taking William with us.  He is leaving for college on Sunday, and we are piecing together shopping for that.  Janey did fairly well with him there, but that was by means of him whisking her away the minute she got crazy, for escalator rides or quick walks.  And by means of literally grabbing the first 3 towels I saw to buy William.  We then went to ToysRUs, which she enjoys looking around at.  However, she quickly found a toy she took an immense liking to, a hugely overpriced electronic counting Elmo toy.  It has flashing lights and an annoying song---what else could you want?  She has some birthday money, and I had hoped she'd like something else, but she now knows what the checkout counter is for, and pulled me over to it so we could make the gadget ours.  Time used up---about 10 minutes---leaving many hours left in the day to fill.

I made some calls to try to get something started to help all this.  I got a referral done by my pediatrician to get Janey seen at Boston Medical Center, which I am told has a good autism program.  We have an appointment in October for just Tony and me, to do intake.  I also made a sooner appointment for myself with a new rheumatologist, to try to get some health answers so I am better able to handle things.  Tony is going to call Janey's psychiatrist today, to see if we can adjust her medication.  We are doing what we can, but there is honestly not that much that can be done.  There are times when her behavior is such that one's instinct would be to take her to the emergency room.  If it were something physical wrong with her, and she was showing symptoms of the severity of the ones she is showing, I bet I'd get very quick and wonderful care.  But I've read enough accounts of people in desperation taking their melting down autistic kids to the ER to know it's a waste of time.  Which is, of course, a crying shame.

My theory as to why things have gotten worse, besides the unstructured time---Janey is getting closer to puberty, and I know how that affects any girl.  She is rapidly getting stronger, and bigger, and she is frustrated, I am sure, with her limited speech and independence.  During calmer times this summer, she was showing me in many ways she wants a little more freedom from me---the tiny bits she can have, like sometimes walking without holding hands, like being in a different room---she actually said one day "I want privacy"---a concept I was surprised she understood.  But if I let her even go into the bathroom by herself, she wrecks havoc---towels in the toilet, water overflowed, all the toothpaste squeezed out---even as she is getting better at using the toilet on her own.  How do I figure this out?  What can I do?

I think I'm scared of a point arriving when Janey truly starts hurting me.  That is very hard to say.  But she is more often lunging at me with her mouth open, wanting to bite me.  The other day, angry I didn't change her Netflix show quickly enough, she smashed the remote on my wrist, and I feared for a minute it was broken.  What do I do about this?

Lots of questions here, which are of course mostly rhetorical.  There aren't answers.  All I can do is hope that Janey gets through this phase and back to the one she was in previously, when she was a delight and I felt a lot of hope.  I need that hope.

Saturday, August 17, 2013

Partially Respited, Partially Not

This morning, Janey went to the respite house, which we are calling "The Treat House".  They did a trip to the aquarium, then to the beach, then back to play outside.  Janey seemed happy to be going there, and happy when Tony picked her up.  The respite lasts from 8-2.  We were lucky enough to get a scholarship for the rest of the year for their Saturday program, which otherwise would cost $65 a day and be a little out of range.  It takes us about half an hour to drive to where it is, so it gives us 5 hours outside of the driving on days she goes, which I guess will be about twice a month (they have 3 Saturday programs a month, but I'm figuring on average only 2 of them will be something we think Janey would like).  10 hours might not seem like a lot in a month, but once we settle into it and really believe we have it, which still seems hard to believe right now, I think it will be a big help to us as a family.  Today, unlike the first two times, we didn't attempt a meal out with the boys (that was getting expensive)---Tony did housework and I put a few things on ebay.  It's surprisingly relaxing to work when you know you won't be interrupted every few minutes by hysterical crying.

Tony and Freddy are now out for a rare treat---a Red Sox game.  They got free tickets, and I think they are enjoying themselves even though the tickets are in one of those spots Fenway Park is famous for---an obstructed view seat, which means just like it sounds like it means---you can't really see the field.  But you are there!  William has gone as our sole family representative at a party we were all invited to, and Janey and I are here.  It's been---tiring.  I start times like this with all kinds of resolutions to keep Janey happy.  We went in the wading pool, we read together, I watched a video with her, and then she started freaking out, for no reason I can figure out.  REALLY freaking out, as she does lately---scratching herself until she has welts, screaming the same nonsense sound over and over, trying hard to bite herself and me, flinging things--all that.  At the same time, predictably, my afternoon tiredness kicked in.  I think being Janey's mother alone could cause it, but it also is caused by the one autoimmune disorder I have been formally diagnosed with, Sjogren's Syndrome, and the other two that blood test show I probably have, but which I don't yet have all the symptoms of, lupus and scleroderma.  Just for fun, I also have a severely underactive thyroid, which I'm taking about as high a dose of replacement as you can take, after having my dose raised over and over.  So the tiredness---yeah.  It's pretty bad.  Times like this feel very, very, very, very tough.  The morning's respite feels a million hours ago, and I feel like I am not grateful enough for it.  I struggle to stay awake, and not just awake but alert---alert to Janey's self-destructive behavior, to her grabbing every food around to take a few bites of and then throw the rest on the floor and step on, to her pulling stuffing out of the couches, to her taking off her clothes over and over, to the possibility of her using the floor or furniture as a toilet...to all of that.

And so, what is my point?  I guess it is that I feel guilty.  I feel guilty that taking care of my own child is so tough.  I feel like I should just be feeling grateful I had respite this morning, that she went to 6 weeks of summer school, that she will soon be starting school again, and still, just an afternoon and evening alone with her is so hard.  I am angry at my own body, for feeling old and tired, for having stupid disorders that make me tireder.  I am guilty feeling when I read blogs about people that homeschool autistic kids, that seem to have it all together, although in my realistic moments I know that even among autistic kids, Janey is tougher than most, and that what goes in a blog doesn't tell the whole story.  I am my own toughest critic.  I feel like a failure for not having "cured" Janey, although I would be the very first to say autism isn't curable, and to tell any other mother that such a guilt feeling is one they should banish from their minds for good.  I know once I sleep, once I get a bit more housework done, once I have a chance to regroup, I will be able to take a more positive, proactive stance.  But in the meantime, thank you to each and every one of you for again being there when I need to talk.

Friday, August 16, 2013

Birthday ups and downs

Janey is nine today.  Most other years, on her birthday I wrote sort of a summing up of how she was doing.  Today, though, I thought I'd write more about her birthday itself, as a way to share the ups and downs of special days with a child with autism.

The last few days, I've been talking a lot to Janey about her birthday, trying to get her prepared.  I knew they were having a party for her at summer school, as it was her last day there and her birthday, and I wanted her to get used to the idea.  I sang her the birthday song quite a bit, which she sometimes has a hard time with, as do very many kids on the spectrum.  I think with Janey, part of it is that the song is often sung off-key, and that upsets her a lot.  But it's also a time when all attention is focused on her, and that can be too hard, too.

I decided I wanted Janey's birthday to be as low-key as possible, and wanted to do things she would enjoy all day.  The time while she was at school, I planned to focus on her brother, who shares her birthday.  He turned 16 today, and I always want to make sure his birthday is special as well as Janey's.  As their needs are obviously very different, it can make for some tough decisions.

Janey started the day in a mood.  She didn't like the clothes I tried to put on her, and threw a tantrum and screamed.  I decided what clothes she wore was less important than her having a calm day, so I let her choose her clothes herself, and she made a pretty nice choice, and was happy by the time we left for school...  While she was at school, the rest of us went to the mall, and got Freddy his present, a couple pairs of sneakers.  I managed also to get a few presents for Janey, at a nice store at the mall called Marbles, the Brain Store.  I went there because I'd read they have a lot of toys that work well for autistic kids, and they did---most for higher functioning kids, but I got Janey a very cool circle of wooden balls of various colors, which is sort of a big fidget toy, and also a wooden robot that can be folded up into a square.  No pieces to lose with either, they look nice and they are something she can play around with.  I felt very happy to find them.

Then we went to pick up Janey, and it seemed she had a great day.  They really did it up for her!  Here's a picture...



 of Janey with her teacher and one of her paraprofessionals.  They gave her cake, pizza, a balloon, a bag of presents---she is a lucky girl!   She left the school happily, walking along with Freddy, her birthday twin.

Then we went to a friend's house.  She wanted to give a present to Janey and Freddy.  That was probably the high point of Janey's day, as she loved the present, a giant pillow (thanks, Christine!!).  She was happy there, but we just stayed a short time as we were headed to the store for cake.

Janey was good at the store and picked out her own cake, and we headed home for a little family party with just us and Janey's uncle.  That is when things started to go downhill.  I guess Janey had had enough birthday.  I think she was tired, and just wanted cake without all the ceremony.  We did the candles and sang, and I tried to get a picture of Janey as we sang.  I have always vowed not to take pictures of Janey as she cries, but this time, it just happened.  I have been trying to decide whether to put this picture on here, and decided I would.  I've always tried to be honest when writing, and Janey's screaming and sadness are a huge part of her life.  It would seem kind of untrue to her to only post happy or neutral pictures.  So here's Janey, very sad about the birthday song and candles...
Janey actually cheered up a good deal in just a minute after that, when it was finally time to have the cake.  She likes blowing out candles, and she did her best, with Freddy helping too, as they shared a cake for the first time ever!  (I got a second cake for Freddy to have at a party with his friends later this weekend)

After the cake, Janey had had it.  We were upstairs at my brother-in-laws for the cake, so I took her downstairs.  She screamed and cried for quite a while.  Finally I thought to say to her "Your birthday is all over now!" which is not what you'd think the birthday girl would want to hear, but she looked hugely relieved!

It's so hard to know how to handle occasions like birthdays with Janey.  I wonder sometimes if it were just Janey's birthday, and not Freddy's too, if I would choose to almost not celebrate it, or keep it so low key as to almost not be detectable.  But somehow that doesn't seem like the right thing to do.  I want Janey to have memories of a cake, of presents (I gave her the presents just a little bit ago, unwrapped as she prefers, and she looked them over, but wasn't quite ready to be interested in them)  She certainly loved the pillow, and the cards she got, and she seemed to like the party at school.  Maybe overall she didn't cry much more than a lot of days lately, but it felt like more because I had been wanting so much to make it just a happy day for her.  But that is often impossible.  I guess I just can do what I always try to do---do the best I can and hope for the best.  

Happy Birthday, my sweet nine year old girl!  



Monday, August 12, 2013

The Least of These

This evening, Janey craved some ice cream, as she often does.  Tony and the boys were off to a concert, the first big concert the boys have been to, so it was ladies night here, and I decided we'd have ice cream for our ladies night.  We walked to the corner store.  Believe me when I say that it's not really an upscale place.  Tonight was a vivid illustration of that.  The people hanging around outside the store were people you usually only see in movies when they want to show that something very scary is about to happen, or that you are in a very, very bad neighborhood.  But Janey wanted her ice cream, and my fear of how she'd react if we turned around far outweighed any nervousness about the folks outside the store.  As we got close to the door, one of the lowlife looking guys rushed over and opened it for us, and gave Janey a little bow.  When we got in, several other interesting looking people started shouting toward the cashier.  I braced myself for some demand for money, but instead they were asking him if there were any rules about how many squirts of syrup you could put in a slushie (if you are interested, there are no limits on that).  Janey took a long time to pick out her ice cream, as she doesn't like to rush important decisions, and a woman that looked very much like she might be involved in a very old profession was waiting to get ice cream, but when I told Janey we needed to hurry it up, she said "No rush at all, honey, let the little sweetie take her time"  So we did.  Finally, ice cream in hand, we went to check out.  The cashier smiled a huge smile and said "Hey, I know that girl!  Hi, there, darling!"  I said "yes, she's a regular" and he laughed and laughed and said "We are always happy to see her!"  I asked Janey to say thank you, which she sort of did, and we were on our way.

Walking home, I was fighting back happy tears.  Janey certainly wasn't acting "normal" in the store.  She was making her sounds, and jumping up and down, and waving her arms about, and in general not acting at all the way you'd expect an almost 9 year old girl to act.  But the people there treated her with kindness and respect.  And I thought how that's pretty much the only way I judge people any more.  If you are good to Janey, if you are kind to her and accept her and treat her well, I see you as a good person.  Maybe that's too simplistic.  But I can't think of a much better gauge.

I'm not very religious, but from somewhere,  from some long ago Sunday school lesson or sermon, I recalled a Bible verse.  I looked it up, and it's Matthew 25:40, which says "And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me."   It's referring to feeding the hungry, and clothing those without clothes, and visiting prisoners, but I don't think it's a stretch to apply it to being kind to another kind of "least of these brethren", those like Janey, with autism and intellectual disabilities.  How we treat people who, although I don't like to think of them as "less", are different than us---that seems like a pretty good way to judge people.  And you just never know.  Today reminded me of that.  Another time, the person going out of their way to be good to Janey might be a millionaire, or a grumpy teenager, or a fellow classmate, or anyone else.  Whoever they are, I thank them, from the bottom of my heart.

Friday, August 9, 2013

Progress Despite It All

Although this summer has been tough in many ways with Janey, I'm realizing it's also been a summer of huge progress.  The two may be connected.  The last week has seen a big decrease in the screaming and crying, and I'm able to relax a little and take stock of what Janey has been doing, and it's quite encouraging!

First, her speech.  She has been talking in ways we haven't heard before, or have heard only on very rare occasions.  A few examples---the other day, Tony took Freddy and Janey to Chipolte on the way home from getting Freddy at work.  After they ate (and Janey was good for eating, progress in itself!), Janey said "Do you want me to clear the table?"  All mouths dropped open!  That's usually what one of us says after a meal there, but who would have ever guessed she'd say it!  Tony gave her some napkins to clear, which made her very happy.  Another time we were all in the car, discussing our favorite foods (not an uncommon topic in our food obsessed family).  All of a sudden, Janey yelled out "Indian chicken!"  She actually joined the conversation and told us her favorite food!  A few nights ago, she craved some Chinese rice (fried rice) and Tony ordered some.  We all walked to the square near us to pick it up, and on the way home, Janey jumped up and down excitedly and said "I'm almost having Chinese rice!"  I know I've NEVER heard her use a word like "almost" correctly before.  We were thrilled.

Janey has also started to seem to differentiate between family members more than ever before.  Usually in the past, it seemed like we were fairly interchangeable to her.  But this summer, we have been assigned roles.  If  Janey wants Netflix or a video, only I am able to put it on.  But if she wants food, that's Daddy's job.  Last night as I opened the fridge, she sneaked out a jar of mayonnaise, and immediately took it over to Daddy to see if he'd give her some, sliding past my attempt to grab it.  She knew he was far more likely to give in on that one than I was.  She has also been calling the boys by name.  The other day, William came into the back yard where she was playing, and she called out loudly "Hi, William!" which made him very happy!

Janey is also showing an interest in drawing and writing, which is totally new.  She has never drawn anything recognizable, but she might come by that naturally, as neither have I, really!  But I got her a sketch pad the other day, which she was eager to use.  Below is the very first thing she wrote in it...

Yes, it's a J!  I was so happy.  You can see an example of my artwork in this next picture, where I asked Janey to put the mouth on a face...  (I drew the face, and Janey drew the mouth)
I was happy she got what I meant, and added the mouth quickly!

Lastly, Janey is showing signs of wanting more independence.  This one is harder for me to accept.  For her whole life, Janey has held my hands when outside anywhere but in our own driveway or back yard.  She has been just too prone to running away or doing impulsive things for me to let go.  However, lately she is constantly dropping my hand and wanting to walk on her own.  I started giving in, slowly at first, but I'm realizing something amazing---she is staying with me!  She's walking on her own at my pace!  It still makes me very nervous, but she is almost 9, and it makes sense she wants to not always be holding my hand.  She loves to do things like walk along a crack in the sidewalk or run her hands along trees or walls, and now she can do that.  This morning, as we walked to summertime school, we got to a place where we have to walk next to buses.  This is where I usually grab Janey's hand, and as I was about to, she took my hand.  It showed me she is aware of safety and her surrounding more than she ever was, and knew we were in an area she needed help with.

So, despite the very tough times here and there that this summer has brought, I hope, and I shouldn't even write it to not jinx it, but I'm knocking on wood---that at some point in the future we may see the summer of 13 as a turning point.  I hope so---I dream so.

Tuesday, August 6, 2013

The Back Yard

Today has felt a lot better than yesterday.  Janey has cried a little less, but a lot of it is just me trying very hard not to be negative.  When she cried some this afternoon, I worked hard to keep my voice upbeat, and said as cheerily as I could "Let me know when you ready what is upsetting you or what you need, and I'll help" and I walked away a bit.  A few times she did (cheese, go outside) but other times she just cried a while and then stopped.  And I kept my sanity.

Going outside is Janey's favorite thing, with the possible exception of music.  She loves to be in the back yard.  This afternoon, I took a bunch of pictures of her, for fun and to show what DOES make her happy, as so much of this blog is about what DOESN'T make her happy!  Our back yard isn't a showplace, but it's fairly good sized for a city yard.  It's on a slope, which doesn't bother Janey---she likes running up and down the little hill.  The times when Janey is outside, making up her own games and just enjoying nature, are the times she most reminds me of myself as a girl.  That's what I did, every available moment.  I love seeing Janey play in a way I completely can relate to!

                                                     Janey looking at the grape vines....


Making up a game with a ball and a bucket


Examining a bunch of leaves


Jumping for joy


My sweetheart in the sun


And here's a few bonus pictures.  The first shows a habit that Janey does all the time---pulling on the side of her eye.  I'd be curious if any other girls (or boys) with autism do this.


And here's a picture of Janey's toes.  Ignore the dirty feet---this is after running around barefoot!  What I wanted to point out there is the left foot (which is to the right in the picture!), how the 2nd and 3rd toes are mildly joined, like they have a common root.  They sometimes also overlap.  I've looked this up, and saw it was connected to a few genetic things, and I was wondering if any of your kids have toes like hers?







Monday, August 5, 2013

Trapped

Readers of this blog have told me that they like it that I am honest.  I do always try to be honest, but I also try to not be constantly downbeat.  I've been wanting to write today, but resisting, as I feel like I've been too negative lately.  I tried hard to wait until I felt more positive to write, or to filter out the negative and write only about the positive---how Janey went to the respite house for 6 hours on Saturday and seemed to do fairly well, how there was slightly less crying this weekend, how today she got a good report from summertime school.  However, I'm going tonight to one of my reasons I wrote about recently for blogging---to be a sort of diary, to use when I am needing to write it all out.  So here goes---

I'm feeling incredibly trapped lately.  Not trapped in the way that I want out of my life, or marriage, or any of that.  Trapped literally in the house.  This trapped feeling comes from how incredibly hard it is to take Janey anyplace, at least on my own, and how her needs keep me from getting away for any significant time.  I am feeling like the walls are closing in, and a lot of factors are working together to make it near impossible to kick that feeling.

Part of it is it being summer.  I grew up in Maine, where summer is the glory of the year.  I even then wasn't a summer person, but I spent nearly all my time outside.  I walked in the woods, swam in the ocean, read in a cluster of tall grass, went on little trips to the beach or to get ice cream (which living on a peninsula meant usually a drive to Rockland, a good half hour to get there), walked to the candy store 3 miles away---I was on the go.  That is the kind of summer I wish my kids could have.  My boys do, in the urban way.  They are very good at using public transit, and they can get wherever they want by bus and train and subway, and they do.  But Janey?  Taking her anyplace is so tough.  Today after school, I wanted so much not to just go home.  But Janey has been in screaming mode, and thinking of a place to take her was an impossible task.  Sometimes she will tolerate the grocery store, but we didn't really need groceries, and quite frankly, that wasn't what I had in mind.  I considered a park or playground.  Playgrounds just don't work, as Janey is now considerably bigger than playground age, and with her noises and lack of ability to socialize, it turns into a starefest, and Janey doesn't enjoy herself anyway---not worth it.  Boston has a lot of nice parks.  The problem there is dogs.  A nice park attracts dog walkers, and Janey is terrified of dogs.  Quite a few times, I've tried a great park near us, and wound up just dealing with a screaming Janey or a paralyzed with fear Janey.  Most of the dog owners are nice enough, but many of them also ignore the leash laws and let their dogs runs free, and if a dog runs up to Janey, despite how many times the owner might tell us that Sparky wouldn't hurt a flea---Janey doesn't understand that.  Restaurants on my own with Janey---ha.  We don't do restaurants.  Stores---almost never good. And so we came home and for the hundredth time, went into the back yard.  Where Janey does fine for a bit, sometimes half an hour, but then she screams, or decides she wants her clothes off, and that is over.

Part of it is also the social isolation that autism brings.  When the boys were little, I often got together with friends and their kids.  The kids would play, the friend and I would talk.  It was great.  But Janey has no friends like that.  And I feel like I've gone from having friends that I could spend time with to having friends that I rarely see, because both the friends and I understand that a visit with Janey involved is not a visit.  It's a shared child care time.  Janey will destroy their house, find anything non-childproofed, scream, wet on their floor, grab food---I wouldn't have me over either.  I talk to friends on the phone, but the long leisurely get-togethers---they never happen.  I miss them.

And part of it, I need to admit, is me.  I don't feel up to the challenge of taking Janey places.  I am tired all the time, from her not sleeping.  I can't run fast enough to catch her if she got away.  I have a very hard time with the stares, and the stares always happen.  It is easier, at least physically, to mostly stay home.  But mentally, it takes a toll.

This afternoon, I felt I just couldn't stay home another minute.  I begged Freddy, who wasn't working, to go with us someplace, any place.  Freddy wanted to shop for shoes.  So off we went.  As soon as we got in the store, Janey started crying and screaming.  I tried hard to ignore it.  I walked her around, had her look at mirrors, talked to her.  But the screaming got louder and louder, and it was impossible for us to shop, to say nothing of anyone else in there.  We left within 5 minutes.  In the car, I opened up to Freddy more than I usually do about how discouraged I felt.  I try not to do that with the boys, ever.  They need as close to a normal life as they can get.  But I felt bad for him, not being able to do such a basic thing, I felt bad for Janey, being so tortured by whatever demons torture her that she couldn't tolerate a normal store and I felt bad for me.  I mostly, at that moment, felt very bad for me.  Which I'm not proud of.

I long to put Janey in the car and drive---drive to some faraway place.  My fantasies don't allow me to drive away on my own.  I can't do that.  But I wish I could take Janey and escape this house, this life, even for a day or two.  I wish the autism was something I could leave at home, not for good, because Janey's autism is part of her.  But for a few days.  I wish I could have just a little, little, little vacation from the autism, for Janey and for me.

Friday, August 2, 2013

Small Triumphs

I won't lie---the last week has been a tough one.  Janey has been crying a great deal, and has starting with the biting of her arm again, and added a new fun one in---scratching herself badly.  I cut her nails short, and at summertime school, they are keeping a jacket on her all the time for the arm biting (they have AC) but the crying---it's tough.  We really don't know what's up.  It's probably just one of those swings Janey has at times---a bad few weeks, a good few weeks, a great few weeks, a hellish few weeks---and we are never sure why.

But today, there were a few small triumphs, in the middle of a day of screaming and crying.

The first was a good library trip.  Last time at the library, which I wrote about, Janey had a fit.  Today, after picking her up at school, I told her right away we were going to the library, but I was going to just get books at the desk this time, no walking into the stacks.  I also told her if she could be a good girl in the library, we'd get a treat at the CVS, whatever she wanted (the CVS is next to the library).  Janey cried most of the way to the library, so I wasn't hopeful.  But once we got in there, she truly held it together and didn't cry at all, and stayed with me and was perfect.  So off to the CVS we went.  I was thinking that one nice thing about Janey vs. "normal" 8 year olds is that I CAN tell her she can get whatever she wants at the store, because she won't decide that what she wants is all the toys, or a hugely expensive odd thing like an "as seen on TV" wonder knife or something.  She walked right in to the store to the area where the chips are, and for the first time I remember, didn't immediately grab the thing she wanted.  She stood and looked at all the chips for quite a while, and then picked a bag of sour cream and onion ones.  I felt like she really understood the whole deal---the behaving at the library, the treat and even the picking out of the treat.  It felt nice.

When we got home, I had some packing of books I'd sold that I very much needed to do.  I put on The Goofy Movie for Janey, her current favorite, but after watching it a bit, I turned to see she was out of sight.  I was in the middle of taping something, and actually finished the taping---a risky 20 seconds or so---and then went to find Janey.  I found her in the bathroom, and I started looking right away for her usual mischief---toilet paper all over, toothpaste squeezed out, her trying to take a bath with clothes on---but inside, she saw she was wiping herself, after very, very successfully using the big girl potty for what sometimes becomes a huge mess.  I was thrilled.  She has never used the big potty for that on her own before---we've caught her about to go a few times and taken her there, but this was all her.  She got a big high five (after hand washing).

Even though most every moment not described here consisted of crying, I decided to take a risk and go to the post office with her, as I had things that very much needed mailing.  I told her that if she could be good at the post office, we'd get a doughnut.  That was probably too much for today.  She cried most of the time at the post office, even though it was very quick there and the clerk knows her well and was very sweet to her.  When we got out, she looked at me with tears in her eyes and said "David Donald Do?  Dreamed a dozen donuts and a duck dog too?"  which is a quote from Dr. Seuss's ABCs.  I got her the doughnut, mostly for understanding what she was supposed to be doing and what the reward was, which is a step forward.

I have been trying, in one of my many tries at a new way of thinking or a new strategy, to see the crying as just a background thing---not something that has to be fixed or dealt with right away.  A few times today, I told Janey to try hard to calm down, and then walked away to give her a minute or two to do so.  That goes against so much of what is my instinct, but it seemed like she was trying.  I praised her a lot for even a minute of non-crying.

Maybe I'm able to see the good in today because it's the weekend, Tony is home for a few days to help, and Janey is going to the respite house for 6 hours tomorrow.  I'm going to keep trying to pick out the good from even the tougher days.