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Friday, January 30, 2015

After the Blizzard

Janey just took off on the school bus, her first day of school since Monday.  As you probably know, we had a blizzard here this week.  And as you probably can guess, Janey did not enjoy the break in the routine much.

The first few days were manageable.  Tony was home, as his work was closed too, and together we all worked hard to keep Janey busy and distracted.  There were plenty of times of screaming and tantrums, but some better times too---watching videos, reading books and as often as we could, tiny trips outside to see all the snow and to give her a change of scenery.

As is often the case, though, after two days, Janey had had enough.  I think she probably felt she had lived through some bizarre middle-of-the-week weekend, and Thursday, it was supposed to be over.  Whatever it was, she woke up in a terrible mood yesterday.  Before 5 am, she had lashed out at me over and over---hitting me, bending back my fingers, kicking me and trying to bite me.  It was not pretty.  When Tony came to help, she hit him also, which is less common.  Her rage went on and on, and Tony eventually decided to take another day off.  I was upset he was going to miss work, but to be truthful, I don't think I could have handled her all day by myself.

The day was very long.  Janey would have a calm period, but then inevitably, we'd have to say no to some request, and she would freak out.  Or she'd start her "snuggle on Mama's bed" routine, which has become a complex dance of us moving from one bed to another over and over, with rules that are known only to Janey and which I constantly break, causing her to be furious.  I lie down for a minute with her, and then she said "Want to snuggle on THAT BED OVER THERE" which sometimes means I'm supposed to move to that bed, sometimes means we both are, and sometimes means just she is.  I guess wrong a lot.  It might sound funny, but repeated twenty times a day, it isn't.

I'm sure you might be reading this and thinking "Boy, they give in to her a lot".  Well, we don't, really.  She makes requests all day every day, and probably 90% of the time, the answer is no.  But when it's something we CAN do, we try to do it.  However, it's very rare that that actually works.  But what are we supposed to do?  If Janey asks to hear a book, after being told no to all kinds of other things, I try reading her the book.  Of course, I read it wrong, or read the wrong book, or read it at the wrong pace, or say the words a little differently than she is expecting, and she rages.

More and more, Tony and I feel overwhelmed.  Caring for Janey is a two person job at the least---often more.  We are left with very little time for the minimal needs to live.  It's hard to find time to cook, to do chores, to take a second to regroup.

We are pursuing help.  I've taken some steps hopefully to work on the Mass Health mix-up, and we have put in an application for the Lurie Center at Mass General hospital---a clinic we've heard good things about.  We are going to have a meeting at school soon.  We are ready to accept in-home help even if it isn't respite, if we can get that.

But our experience with Janey's hospitalization has left us realizing that the help out there is pretty limited.  When the hospital discharged her with NO help in a discharge plan---well, that was an eye-opener.  We need respite, in whatever form we can find it.  We are open to a private or residential school, if such a thing is possible.  The short school day she currently attends, although it's a wonderful school and is staffed with great people, is not enough for her.  We have realized that in the last month or so.  This current setup is just not working.  None of us are living a life that feels anywhere close to sustainable.  But saying all that is very, very different than actually getting the help, despite what seems to be the perception.  The state agency that deals with developmentally disabled kids has nothing to offer at this time but a referral back to the local autism agency.  They are well-meaning, but offer really only things like occasional parties outings.  Even if the Mass Health is fixed, at this point, they don't cover autism services, nor does our other insurance.  There is simply almost nothing available for help.

That truth--that so little help is available---is something very hard for people not living this life to accept.  I think sometimes people want to think there's all kinds of help we are not taking, out of pride or stubbornness or something.  I think people feel better thinking there is help there which we could get if we REALLY wanted to.  But those of us living the lives of autism parents know the truth.  There is not help, not meaningful help.

I don't want to be discouraging, but the truth is, I'm discouraged.  I'm discouraged most of all for Janey.  She is not happy.  I'm discouraged for my sons, who must deal always with turmoil at home.  I am discouraged for Tony and for me.  Increasingly, Janey's needs are standing in the way of such basic things as making a living, sleep and health.  The stress we feel at all times is indescribable.

And so, after the blizzard, we are left with the reality of our lives.

Monday, January 26, 2015

Just the discouraged facts

I spent quite a bit of time this weekend writing blog posts that I then decided not to publicly post.  I was feeling quite low, and I had to remind myself that there is a difference between a diary and a blog.  The posts I wrote were more like diary entries, and I will save them for myself.  But I did want to talk about how things are going, and I decided to try to write just the facts, the narrative without much commentary or annotation, about some of the weekend.

On Sunday morning, Janey was restless as soon as she woke up, wanting to go outside.  We took her out as soon as it was light.  It had snowed some on Saturday, and she loves playing in the snow.  We played for a while, and then decided to take a ride, as I was feeling housebound.  We drove around a bit aimlessly, which we all usually enjoy.  Janey asked for donuts, and we got her some, and I asked for a Starbucks treat, and we got that (although Janey drank much of mine)  We were feeling cheerful and upbeat looking at the pretty snow scenery.  Then Janey asked for crab rangoons.  We told her that the Chinese restaurant wasn't open until much later, and Chinese food wasn't in the plan for that day.  She was displeased.  She was so displeased she reached forward, stretching the seatbelt, and hit Tony hard while he was driving (we have a very small car).  He stopped, told her in no uncertain terms she was never to do that again, and waited until she seemed to have calmed down.  Then we drove home, as she screamed.

Once in the house, she continued to tantrum for a long time.  As she did, Tony and I talked about our discouraged feelings, how things seem to be going downhill.  It was the first time I think we both together realized that we might need to work on a goal of getting Janey help long-term, and of what that might mean.  It was a hard talk.  We realized we are slowly coming to terms with the fact that Janey's current situation, both at home and school, might not be ideal for her.

Later in the day, we asked Freddy to watch Janey for a bit so we could both get some chores done.  He did a wonderful job, singing and dancing with her to a song they had made up.  Freddy realized the tune was that of an actual song, and found the song on YouTube for Janey to hear.  Janey didn't like that idea, and let Freddy know that by hitting him in the face, hard.  He said to her "Why would you do that?  I was being very nice to you!"  It's a question I often ask her, in my mind.  I took her to time-out, in our current time out location, the bathroom, which in our house is away from everything in the back (it's an old, old house and the bathrooms were a later addition)  I told her why she was there and gave her time to calm down, which she did, quickly.  So quickly and so cheerfully that I wondered, as I often do, if the time-out actually is something she aims for.  However, there is really no other alternative, and it at least gets her away from the hitting target.

Janey went to bed at 7:30, a little later than usual.  Since she's been home from the hospital, she has slept through the night every night, which has been incredible.  That is, every night until last night.  She woke at 12:30 am, and that was the last of sleep for her.  Tony tried to keep her from waking me, but I woke anyway, and stayed with her a few hours so he could sleep.  When I could no longer keep my eyes open, he took back over.  We did everything we think best to do when she won't sleep---no TV, no giving in to food demands or other demands, just quiet darkness.  She did what SHE thinks best when she can't sleep---endlessly asked for videos, music, food, songs---and paced aroudn the house reciting things.

We sent her off to school this morning.  I wrote her teacher an email saying she might be tired, but I doubt she will be.  She isn't usually, after nights like that.

It's supposed to snow tonight, tomorrow and into Wednesday, what is being hyped as a blizzard to end all blizzards.  I am not ready for it.  I am not ready for no respite for days, for possibly no electricity, which Janey does not understand, for not being able to have her play outside, for the whole bit.  I am tired, physically and emotionally.  I am very, very tired.

Thursday, January 22, 2015

When your child bites---Unhelpful Internet Autism Advice

I don't look to the internet for advice on autism much anymore.  I've realized that even within the umbrella of ASD (autism spectrum disorders), Janey has aspects of her personality that are a bit unusual, and that even if she didn't, that old saying about if you've met one kid with autism, you've met one kid with autism holds very true.  It's hard for anyone to give advice about any specific autistic child.  That doesn't, however, keep people from trying.

I was imagining if I had a fairly newly diagnosed child and a problem to solve, and if I sat down at the computer to look for help.  Let's say, for example, I wanted some advice on how to deal with my child biting me.  I did a search this morning looking to see what I could find.  I realized that the three major pieces of advice I kept finding over and over each made me sort of mad, in different ways, in what they assumed about my hypothetical child or about me as a parent.  Why, you ask?  Well, here they are, with my reactions.

"Figure out what prompts the biting"

There's all kinds of variants of this.  I am not saying you shouldn't of course try to figure out what prompts the biting, or in the words ABA therapy uses a lot, what the antecedent is.  I'm just saying that almost any parent in the world would have already done that automatically.  I don't think most of us would be thinking "I'll just view this biting incident in pure isolation.  I won't think a bit about what led up to it".  OF COURSE we have already tried to figure out the prompt.  Sometimes, it's very apparent.  You told your kid no to more cookies and they bit you?  You tried to dress you child and they chomped on your hand?  In those cases, knowing the cause does little good.  What do you do---just give them cookies any time they ask?  Explain to them why they can't have more cookies?  Give them carrots instead of cookies?  Maybe you have a child where those solutions would work, but if you do, you probably don't have an autistic child or a child that bites.

If the cause of the biting isn't readily apparent, and you have to search for it, chances are it's not really the cause.  Kids with autism, as a rule, aren't subtle.  They aren't biting in response to some obscure stimuli.  Often, the sad truth probably is that they are biting because they are upset over something that can't be changed at all, or they are biting for no reason that is external.  In either of these cases, figuring out the cause does nothing.

As parents, we are pretty clued into our kids, and this piece of advice has always bothered me because it assumes parents are clueless.  If the cause is something we can figure out and we are able to change, WE ALREADY HAVE.  If your child hates the sound of the vacuum, you vacuum when they aren't around.  You have already figured that out.  That is not what is causing the biting.

"Give the child something else to bite.  Use a sensory diet"

Oh, wow.  That never once would occur to me.  If my child has just bitten me, all I really need to do is give them a bite toy!  That will fix things!  Oh, there's this stuff called "chewelry" they can bite instead?  You've fixed it all for me!

This one insults the child with autism.  I don't think any child is biting a parent or anyone else because they have nothing else to bite.  There are many, many, many things around a room that can be bitten.  If it's YOU who the child chooses to bite, that's not because you are just handy.  A bite toy or chewelry MIGHT work if your child is chewing their sleeves, or pencils, or something like that, but if they are biting aggressively, it's not really about wanting to bite in gneeral.

Sensory diet.  How I hate that term.  Here's what is meant by that, if you don't know.  It's not that I don't think that parts of what the "diet" consists of aren't helpful things for a child with autism, or for any child or adult.  It's the term I hate.  It smacks of the kind of 5 dollar word used by smug professionals to justify their pay.  I'm being nasty there, and I hope I am not insulting anyone who has used that term.  But use it internally.  When you say it to a parent with autism, you are making them feel like you know some special secret way to help their child.

"React calmly to the biting"

Now here's where the "autism parent as superhero" myth comes in.  Imagine someone has just bitten your hand.  Hard.  Hard enough to leave marks, to maybe even break the skin.  Hard enough that you had to pry their mouth off you.  Hard enough to hurt very, very badly.  Would you react calmly?  Would you say in a calm, steady voice "No biting", without any exclamation point?

Maybe other people can react calmly to severe unexpected pain, but I can't.  When Janey bites me, I yell.  I yell because it hurts.  I yell because I can't help yelling if I am in terrible pain.  I yell because I am angry she bit me.  Yes, I'll admit that.  When Janey bites me, it makes me angry.  And I don't think it's wrong that she sees that.

If by "react calmly", the experts are saying not to hit your child or bite them back, by all means, they should say so.  You SHOULD NOT hit your child or bite them back.  But you already knew that, and didn't need to be told, I would guess.  But staying calm?  We are not superheroes.  No matter how many times you are bitten, if you are really bitten, you scream.  And I think it's probably a good thing for a child to see that biting hurts.  They have to live in the real world, and they will, their whole lives.  People are going to react to being bitten.  And you are a person.

So, after I've dissed all this advice, do I have any to offer in its place?  Not really.  And that is what I wish was admitted more often.  If your child is biting you, and you are a parent with enough sense to come in out of the rain, you have probably already done all you can do to understand, react to and if possible, prevent the biting.  The biting that still occurs is part of the autism.  It may come and go.  It might get better when things are better overall.  It might get worse at times.  But the truth is if your child sometimes bites, they are probably going to keep on sometimes biting.  Protect yourself.  If they are agitated, try not to get in a position where they can bite you.  If they do bite you, get away from them so they don't bite you again.  Put ice on it.  That helps.  And if you yell at them "NO BITING!  YOU HURT ME!"---well, it probably won't do any good, but it's an honest reaction and might not be a bad thing for them to hear.

Monday, January 19, 2015

Mood Stablizer or Mood Shortener?

It's been about a month now that Janey has been taking the mood stablizer medication, and I think I'd have to say it's a tentative thumbs up.  Overall, things have been somewhat easier, although of course it's hard to say what is a result of the medication and what is just part of the ebb and flow of Janey's phases.  But after the second fairly good weekend in a row, and this one even a three day weekend, I feel somewhat encouraged.

I don't know if I'd say that Janey's moods are really stablized, though.  I'd call it more a mood shortener.  When Janey's moods got bad in the past, we'd brace ourselves for at least a few days of stormy weather.  She did not recover well from being upset.  Lately, though, even when Janey gets violently upset, she gets over it fairly quickly, and the rest of the day can often be salvaged.

It's taking us a while to adjust to this new reality.  Yesterday, Janey had a very major outburst when waiting in the car with Daddy for Freddy to be ready to go to the store.  I wasn't there, but Tony said it was complete chaos---screaming, kicking, biting---all that.  We both settled into a resigned, depressed mood, thinking the weekend was essentially over.  I think it took us both a little while to notice the reality---Janey had recovered and was perfectly fine.  She went on to have a pretty good day.

This morning was similar.  Janey got upset that her every breakfast demand was not instantly met.  She slapped me, and then grabbed a huge handful of ice cream out of a half gallon container.  She was about to throw it around when we grabbed her hand.  Needless to say, the ice cream all wound up in the trash, and we were ready, again, for a tough day.  But within half an hour or so, she was happy, cheerful.

School has reported similar situations.  Most days, Janey still will act out at some point---hitting or screaming.  But she recovers.  It seems lately like her underlying mood is good, and the bad moments are the exception.  That is a big, big difference from the past.

For me, the weekend had a few great moments.  One was when I was having a nap yesterday.  Janey started asking for me, and I woke up.  I went out to see her, and she immediately stopped fussing and gave me a huge hug, with a giant smile.  I realized I can barely think of a time that she has done that.  She's done it for DADDY, of course, but for me---no.  She looked so thrilled to see me.  It was wonderful.  The other moment, or moments really, was Janey asking to be read to.  I've always read to her all I can, but it was at best something she tolerated.  Lately, she WANTS to be read to.  If you know me, and my love of books, you know how much that means to me.  It means more than almost anything that could happen.

We are still holding our breath here.  So many changes with Janey don't turn out to last.  And the very tough behaviors are still there, mixed in---just as intense as they were, if shorter.  I am feeling hopeful, though, and a little scared of being hopeful.  2014 was the year of being blindsided---first by the change of schools and then by the hospital month.  I realized I don't like to be blindsided---I don't like it at all.  So I guard myself against it by not getting my hopes up, by anticipating the negative.  But I need to celebrate the good moments, and to recognize progress when it occurs.  So---I am recognizing and celebrating---for now.

Thursday, January 15, 2015

Life Isn't Fair...and other negative thoughts

I will start with a confession.  Almost every day, I dread Janey getting home from school.  It's not that I don't want to see her, but the roughly two and a half hours between when she gets home and when Tony gets home are an extremely tough time.

I try, very hard, to figure out ways to make this time better.  I've written about that before, quite a few times.  I think hard about what to do to improve the time.  Lately I've been giving her a verbal schedule as soon as she gets home "First a snack, then play toys, then read books, then watch a video, then Daddy home"  Janey is really only interested in two of these things---the snack and Daddy getting home---but I try hard with the other things.  When the weather allows it at all, we spend time outside.  This spring, I plan to add a nice long walk to the daily routine.

Today, it all went downhill quickly.  We had the snack---lots of leftover Chinese food.  We played toys.  I had gotten Janey some new-to-her My Little Ponies at the thrift store, and we played with those for fifteen minutes or so.  (Actually, I played with them and she watched---that is how most of our playing goes)  I read her a book about Little Ponies, and she sort of listened.  Then we put on a video.  She has enjoyed some Weird Al videos lately.  She did today too, until one came on that bored her.  I tried to find something else she'd like.  I took a chance on "Dancing Queen" by Abba, which she seemed to like at first.  But then she stopped liking it.

I knew she'd stopped liking it when she kicked me, hard.  As I got up and started to lead her to time out, she reached over quickly and smashed my nose, hard enough that it hurt very much.  I cleared away quickly enough so she wasn't able to bite me, as she was trying to do.  I shouted for her to get on the bed.  I try to stay calm, but I wasn't feeling calm, and yes, I yelled.  She got on the bed, in a fury.  She tried to get up immediately, and I told her to stay where she was.  She lunged at me.  I walked away.  She got up.  I stopped trying to get her to stay on the bed.  I didn't want to be bitten or hit again.  She asked for strawberry milk.  I said no, not right then, not the way she'd been acting.  She decided to fix it herself.  As I ran over, she spilled the whole canister of powder on the floor and grabbed a glass of water and poured it over the pile of powder.

At this point, my mind just kept saying one thing, a not very useful thing.  I was thinking "This isn't fair"  I haven't really thought that in that particular way before.  I've had, of course, a few moments of thinking that other people do have it easier, but I very much believe that oft-repeated phrase "Life isn't fair"  What I was feeling right then wasn't that, though.  It was feeling that the relationship between Janey and me isn't fair.  I try, I try so very hard.  And she seems to try not at all.  I always struggle to be positive, to make her life better, and I was feeling right then---she never tries to make my life better.

Of course, I realize that isn't fair to think.  Janey is not capable of seeing things from my perspective.  She isn't purposely trying to make my life hard.  I am sure she doesn't want to be the way she often is, angry and destructive.   But damn it, it gets hard sometimes to be her parent.  It gets hard to see the silver lining.

Lately I have very little energy.  I am not sure why.  I am tired all the time.  Some of this might be depression, or hopelessness, but a lot of it is probably physical.  It's been a few years since my thyroid dose was adjusted up, and I recognize a lot of the tiredness as how my body feels when my thyroid replacement is not enough to work.  Or it could be one of the two or three other autoimmune waiting in the wings, the ones blood tests show I have although my body doesn't yet show all the signs.  The tiredness, whatever the cause, isn't helping matters.

Still, things are better in a few ways, I realize even on my worst days.  Janey is crying less and sleeping better.  She is calmer overall, for sure, than she was during the dark days in November.

It's when I write entries like this that I hope all of you who have told me that even the discouraging posts I write can be helpful are telling the truth.  I don't like to be downbeat.  It's something people point out to me a lot, how I will complain a bit, but then add in something positive to the conversation, even when it's not really warranted.  I'm trying to work on that---on feeling like I have to be upbeat when I'm not.  So---no cheerful ending, although I'm fighting the urge to include one pretty severely...

Sunday, January 11, 2015

A better weekend, with guesses why

I've said many times that Janey's moods often seem to have no rhyme or reason.  Of course, that doesn't stop me from trying to figure them out.  I have to.  If there's any pattern, I have to try to find it.  I think I do this more with bad moods than good ones, but I'm trying to make more of an effort to figure out Janey's good moods, as after all, they are the moods I want her to have more of.  This weekend was mostly a good mood weekend.  That's not to say there weren't crying moments, or hitting moments, but overall, Janey's mood was quite good.  So...why?

I have a few theories.

One factor might have been that we made an effort to get Janey out of the house for a good period of time each day.  These weren't exciting trips.  They were shopping trips with Daddy, going to a lot of different stores, and a trip to take William back to college.  But when we told Janey she was going to go for a ride in the car, each time, she was thrilled.  She is an easily bored kid at times, and she craves being places other than here.

Another possible factor----I tried, each night and each morning, to outline what the day to come would be like.  I think one problem on the awful day from hell last Thursday was I didn't do enough to explain to Janey why she was home.  I couldn't at night---we got the call about school once she was already asleep, but I think the minute she woke up, I should have explained very clearly that she was going to be home, Daddy was going to be at work, and her brothers were home.  Many people have suggested visual schedules for Janey, and we have tried them, as they have at school, but Janey simply isn't very visual.  I have never once seen her look at a visual schedule unless I directed her to.  But anyone that knows Janey knows that she remembers everything she hears.  She might not give an indication of that, but she listens very well.  So I've started saying each night something like "Tomorrow is a school day.  You will go to school, and Daddy will go to work.  Freddy will go to school, and William is away at his college school.  You will come home, and Daddy won't be home yet.  Freddy will come home, and then Daddy will come home."  I tell it slowly and in parts, and repeat it a lot, and I think this helps Janey know what to expect.  So she knew, this weekend, that Daddy was home and she was home.

We also had sunny weather, which we haven't had much of this winter.  Janey loves the sun.  She somehow remembered a song I can't recall playing for her, Katrina and the Waves singing "Walking on Sunshine" and she sang that a lot this weekend, with a look of joy on her face.

We also, as much as possible, gave Janey a lot of concentrated attention.  For whatever reason, she is no longer much interested in TV or videos.  I'm sort of glad about that, but I admit, we got used to that being a lot of her day.  So we are needing to step up to the plate and fill in that time.  Luckily, Janey has gotten very into books lately.  This is a dream come true for me.  We spent a large part of the weekend reading.  She loved hearing "McElligot's Pool", an old Dr. Seuss book, and we read a lot of other Dr. Seuss books.  We also played toys a lot.  I put all of Janey's toys in one big huge bag, and started doing something I call The Lucky Dip---just grabbing a handful of them and playing with what I get.  This keeps us from getting too stereotyped with the play, which is good because if you do something once with a toy, that becomes for Janey what always must be done with it, and she gets upset if I change the routine.

Food, of course, also helps.  Daddy gave Janey huge amounts of food she likes, mostly in the morning, which is her preferred schedule.  The bacon, chicken, greens and pesto were flowing freely.

And, maybe, the mood stablizer is doing something.  I don't know.  It's so hard to isolate out what medication might be doing or not doing, just like it's hard to figure out if anything I've written here had anything to do with Janey's mood, or if she just somehow internally felt happier.

You will forgive me if say that I don't think the mood will last.  I can hope it will, but that is not usually the case.  I think the best we can do is try to figure out how to extend the good moods when they occur and to shorten the bad moods when they happen.  So I'd be thrilled if this mood lasts a few days into the school week, even!

Thursday, January 8, 2015

A Cold Day in Hell

Last night, when the word came that Boston was calling off school for today due to very cold temperatures, I immediately braced myself.  A day off in the middle of the week, for whatever reason, seems like the thing that sets Janey off more than any other.  You might recall how Veteran's Day set off a recent chain of events---yeah.  So I was not happy.  I know all the arguments for calling off the day, I know it was probably the right thing to do, I certainly don't want any children getting frostbitten waiting for buses---none of that.  But thinking strictly of Janey, I was not happy.

The day was hellish.  I have to say---you know how sometimes you think a day is going to be bad but it turns out okay?  That wasn't today.  Janey spent huge parts of the day screaming, just plain screaming her lungs out.  There were a few hours in the middle of the day with slightly less screaming, and the boys helped all they could---thank goodness they were home---but mostly, it was pure hell.  Before the boys were awake, by 10 am, Janey had hit me many times, bitten me a few times, bitten her arm over and over, screamed for a couple hours and generally worn out all my reserves for the day.

Lest it seem like I didn't try to distract her, I'll say that before 10 I also had read her about 15 books.  She has lost interest in TV or videos lately, but I tried, with putting on "Annie" and sitting with her and watching it, to find something she'd enjoy.  I had made her another breakfast, after Tony made her one before he left.  I had played toys with her, I had sung with her, I had looked at birds with her, I'd done everything I could think of to do except go outside, which seemed ill-advised to do when the temp was 2 below and there was a strong wind.   The longest any of this kept her happy was about 5 minutes in a row.

Tony got out of work a bit early, and we had hopes she'd feel better when he got home, but she didn't.  She has been screaming now for an hour.  I am writing to keep myself sane.

We are at a loss lately.  The new medication doesn't seem to be doing a thing.  In fact, she seems less happy than ever.  It is especially supposed to treat mania, and maybe mania was all that made her happy.  She is not enjoying life.  The aggression is as bad as ever.  The screaming is worse than usual.  And we feel out of options.

I got the bill for the stay at Bradley Hospital.  Our insurance covered it pretty well, unlike the Children's Hospital stay, but if we had had to pay out of pocket, it would have cost more than $80,000.  For what?  I noticed on the bill that only about $200 of that was for psychiatric care.  From what I know of costs for that, that is less than an hour.  The rest was almost all for housing.  I know there were nurses there, I know the milieu therapists were trained and worked well with kids, but the stay was not something that helped long term.  It certainly held her in a time of crisis, but knowing now exactly what is out there for help in a time of crisis---well, there isn't much.  And to get what there is requires the horrific "boarding" at the regular hospital first.

Hopefully, tomorrow will be a school day.  And hopefully, the fact it's just one day and then weekend won't cause too many problems.  Hopefully, we will all regroup and keep on trying to do what we can to help Janey.  Hopefully, someday, somehow, she will be happier.

Saturday, January 3, 2015

An Oasis of Wonderful

Janey's mood the last week has been up and down.  If the mood stablizers are working, they are working to overall raise her mood a bit on average, not to really smooth it into a stable mood.  I would certainly say she's been cheerier on average than she was before she started taking the new medication, but the moods are still swinging pretty severely.  We are seeing more patterns.  Janey often wakes up screaming.  This seems to be due to her usually waking up wet and hungry, which are things we can do something about.  She often after that has a very good morning.  As the afternoon wears on, her mood deteriorates a bit, and usually there's a pretty low point about four pm.  She rallies a bit at dinnertime, but gets fussy around five or six.  She's been going to bed extremely early---usually at six or so, and getting up very early too, about four or five am.

Yesterday was Tony's first day at work after a week off.  Janey does not like Tony to be at work at all, especially when she's home from school.  So I tried to keep her busy and on the go.  I needed to drop William off at work at 11.  He works at a Whole Foods which is part of a very upscale outdoor shopping center near here, and I decided to walk around with Janey after dropping him off.  Just the fact I felt I could attempt that is a sign of her improvement over the past few months.

The time at the shopping center was absolutely wonderful.  I saw that without any exceptions.  Janey was a pure, pure joy, and I felt like I was in a dream.

First, we went to a toy store.  Janey looked over the whole store, not getting fixed on any one toy.  She showed lots of curiosity, but was easily redirected to new toys.  She named a lot of toys in delight "A pirate!  A pony!  A whistle!"  Then, we went to an ice cream shop she often sees when riding along to drop off William and always wants to go to.  We don't take her often, as parking is tough and the ice cream place is hugely expensive, but I decided to do it this time as a treat.  She had a scoop of chocolate chip, and ate it in total contentment, sitting by the window and watching people walk by.  Lastly, I went to a store she had no interest in, a paper store, to use the last of my Christmas money to buy a hugely overpriced calendar I'd been craving.  Janey was patient and well behaved the whole time we were in that store.  We headed to the car after that.  I didn't want to push my luck.  I felt like I'd lived through an hour of a miracle.

One thing that kept striking me in the stores was that not only was Janey being so good, she was being better (in my eyes) than other kids around her.  The stores were full of bratty little girls (it just happened to be all girls we saw)  They were begging for everything, whining even while getting all kinds of treats, saying mean things to each other and to their parents---they were being all the things that Janey just isn't.  Janey, as any reader of this blog knows, is far from perfect.  It would be hard for me to argue that any child who attacked a room full of people in an emergency room less than two months ago was perfect.  However, Janey doesn't beg for toys.  She doesn't whine for more treats in stores.  She doesn't say mean things to us.  She was thrilled to be around the toys, without really understanding I could buy them.  She loved her ice cream, without begging for more scoops or more toppings.  She turned several times and looked at me during our walking around as if to say "You are amazing!  What a wonderful time we are having!"  She danced to the music playing over the loudspeaker, danced unself-consciouly with me.  She was in so many ways the child I would have dreamt up, if I were dreaming up my little girl.

At the last store, the paper store, the cashier was taken with Janey and kept saying "She is so beautiful!  What a sweet girl!"  When we were leaving, she said "Goodbye, honey!"  I prompted Janey to say goodbye, and she did.  I fought back an urge to do what I so often do, to tell the cashier Janey is autistic and doesn't talk much.  I fought it back not because I didn't want the cashier to know that, but because I was quite sure she already had seen Janey had special needs.  As Janey gets older, most anyone is going to be able to see she is not typical.  And somehow, I realized at that moment that I don't need to always explain that.  I realized that Janey is special sometimes in ways beyond the special that is part of "special needs"  I realized, that in my eyes anyway, she is special far beyond that.  It didn't matter that the afternoon went seriously downhill after the great morning.  I will treasure the memory of that early in the year shopping trip for a very long time.