Once you notice you've walked off the cliff

In cartoons, often characters walk or run off cliffs, being chased or chasing someone.  In their world, unless you look down, you don't fall---you run along nicely in the air.  It's only when you notice you've left solid ground that you fall.  I've been feeling like we've looked down, and we are no longer able to walk on the air.  We are thinking non-stop about when Janey comes home, and how we will be able to keep running now that we've noticed we are off the cliff.

I tend to wait until the last possible moment to seek help.  When I was pregnant with Janey, and taking the supposedly safe for pregnancy blood pressure medication Aldomet, it took a week of even increasing severe signs of allergy and reaction for me to finally realize I needed medical attention.  By the time I did, I had a high fever, a very low white blood cell count and a liver that was showing signs of severe distress.  That reaction, at 12 weeks into my pregnancy, is one of the prime candidates in my mind for what might have caused Janey's autism.

With Janey's increasing agitation and aggression to others and herself, I feel like I again waited too long to realize how bad the problem was becoming.  In fact, I'd probably have waited forever, had the school not pretty much insisted I take her to the hospital.  By the time we did, two weeks ago, it was highly apparent to almost everyone that there was a serious problem.

Why am I like this?  Part of it is a fear of crying wolf, of saying there's a problem beyond what there really is.  Part of it is a feeling that our children are our own responsibility, that we need to care for them on our own, without help beyond school.  And part of it is denial.  If you don't want there to be a problem, you don't seek help for it.

But now, we have looked down and seen we are in a tough position.  I don't know how long Janey will be at the Bradley hospital.  I got another of the letters today, the ones I am supposed to not worry about, saying she was approved to stay two more days, until the 27th, which is of course two days in the past.  We miss her so much, but we also see they have barely had a chance yet to really get to know her.  They have eliminated two of her medications, which hopefully will help, but nothing new has been added, and we don't know any new techniques to handle her.  When she comes home, I have no real reason to think she won't still be hurting herself and others.  And what do I do then?  I'm certainly not taking her back to Children's Hospital to start another round of waiting for a placement.  I think that would hurt her, and us, more than anything.  She could not take another period of time shut in one small room.

I am scared.  Not scared of Janey, although I don't like to have my hair pulled and my eyes gouged at and my hands bitten, but I can handle that if I need to.  I am scared FOR Janey.  I am scared of what the future holds.  Will it be an endless round of cycles of calm times and then horrible times like the past month?  Will her school still be able to handle her?  Will we?  What will become of us all?  that is what I wake up in fear of.

I said, before this all happened, in a post the day before she went to the hospital, that I wasn't sure there was any help out there.  Now, I see that there are places like Bradley, places besides home and school that can delight in Janey while dealing with her difficult behavior.  However, her time there is very limited, even if she is able to stay the few more weeks I hope for.  

I don't know what is going to happen next.  I don't even know how I'm going to pay all the bills from this current go-round (although this GoFundMe site has made that much less of a worry---have a look here if you are interested)  I want to think Janey will come home my same wonderful girl but with changed behavior, and it will be changed for good, and we all will live happily ever after.  But I don't think so.  One clue to this is how often we have been asked "Is this her first hospitalization?"  I guess there usually isn't just one.

If this whole experience teaches me anything at all, it's going to be to seek out and accept help a little more readily.  Even if it seems like help isn't available, I can see that might be at times because I am extremely resistant to ever saying "I can't do this any more".  I still am.  It makes me cry to think of our family not being able to care for Janey on our own.  I hope we can.  And even if we can't, I'm not sure we have a choice.  I think sometimes I need to stop looking down, to just keep on walking on the air.

NO MORE CHOCOLATE EVER...that's the plan, anyway...

I am a slow learner at times.  If you look at all my posts with the tag chocolate (which you can do here, if you are in the mood), you will see that over and over and over, we have been shown that chocolate has a huge effect on Janey.  It makes her not sleep, it makes her manic, it makes her crazy.  And still, we sometimes let her have chocolate.  I am not sure why, except that she loves it, and that chocolate is all over.  It's a tough thing to totally eliminate.  Another reason, which probably gets more to the root of it, is that I am for whatever reason always overly skeptical of food allergies or sensitivities.  I am not sure why.  My mother and sister have food allergies, which I have seen in action, and I know some food allergies can be deadly.  But still, I continue to follow my general middle of the road type philosophy---a little bit of anything non-poisonous doesn't really hurt.  Well, with all of you as my witness, I am finally going to try to get serious about chocolate.  NO MORE CHOCOLATE FOR JANEY.

Here's what went down.  On Wednesday, when I took William to work at Whole Foods, Janey and I went in for a bit to get a few things.  She spotted something we'd bought a long time ago---a 12 pack of organic chocolate milk boxes.  I said no, not so much for the chocolate but because I wasn't really there for a big shop.  She handled it.  But then Thursday, again we went into the store, and she led me straight to the chocolate milk, and said "I want chocolate milk.  I want to buy that.  Put it in the cart"  That is a very, very unusually good string of sentences for Janey, and it is almost impossible for me to refuse her when she works that hard to tell me what she wants.  So I bought them.  I wasn't even thinking about how chocolate affects her, believe it or not.  I didn't think she'd really drink much of the milk.  She's been off chocolate milk and milk in general for a while.  However, she surprised me by being VERY into the milk.  In the course of Thursday, she probably had 6 servings of it.  Which I allowed.  Because I am not very quick on the uptake, or something.

So-----Thursday night into Friday.  About 3 hours of sleep, tons of screaming, agitation, tears and fits..  Friday, the 4th---a day from hell.  Screaming all day, no nap really although she hadn't slept, the worst day we'd had in months.  Friday night---very little sleep again.  Also Friday night---finally, the realization---this might have something to do with all the chocolate milk.  The milk was hidden.  Saturday morning---still hellish.  Screaming at the store until we had to leave, screaming at home until we all felt ready to cry.  In desperation, I took Janey for an outing to the Trailside Museum, a little outside zoo/nature preserve near Blue Hill, close to us.  And finally, I think the chocolate was out of her system, or walking around outside helped it get out.  She was a delight, happy and cheerful.  And was so the rest of the day.  And she napped.  And she slept well last night.  And she woke up happy.

Of course, because I am a skeptic, I still am not sure of the connection, but I'm surer than I've ever been about a food connection.  For whatever reason, Janey just can't handle chocolate.  This isn't the case for caffeine. in general.  We often let Janey have some coffee (which is something very common in Italian culture) and although I am not big on soda, she has certainly had a Coke or two, and this doesn't seem to affect her at all.  It's just chocolate.  And even a very small amount, like a few M&Ms, can set her off.  I don't know what might be in chocolate that isn't in other things, but there must be something.

So, from now on, we are going to treat chocolate like she has an allergy to it.  We will not have chocolate in the house.  I will ask the schools not to give her chocolate.  We won't buy chocolate anything.  That won't be hard for me, as I am not a big chocolate fan, but Tony loves it, and the boys like it pretty well, but they can still have it, out of the house.  We'll see how it works out.  If it prevents days like we had this week, it's a small price to pay.

It's the middle of the night; I'm a little fed up and I need sleep now

Janey has been up for two hours, after going to sleep grouchy about 9.  It's not a lot of fun.  Tony is currently trying, as I write, to get her to sleep, and I am trying to not project, to not think about how tired I will be tomorrow, to not think about how this might be the start of a hellish cycle, to not think about the many years ahead that right now stretch out endlessly, full of sleepless nights and frustration.

Janey has been making a long string of requests posed as questions---

Do you want me to get you an onion?

Do you want me to turn on the light?

Do you want me to pour you soda?

Do you want me to watch Kipper?

It's pronoun reversal middle of the night autism demonstration time.  We answer no to all, without bothering to try to correct the format of the speech.  It's not the time to worry about semantics.  

Janey is jumping up and down and reciting a favorite Kermit dialogue, Kermit arguing with the Count about what an elevator operator is supposed to do---"You're SUPPOSED to take people to whatever floor they want to go to, and I WANT TO GO TO THE SEVENTH FLOOR!"  She laughs hysterically, and recites it again.  After the 10th time or so, it seems kind of funny to me too, in an crazy sleep deprived way.

We try reasoning with her, which is useless.  We try bargaining with her "If you will stay on the bed, you can play with your iPad.  If we get you water, will you sleep?"  She agrees to anything, but it's meaningless.  These are not binding contracts, and she knows it.

My grass pollen allergies, delayed by the cool weather, have chosen tonight to kick in full gear.  I am sneezing and sneezing, each time causing Janey to recite something funny she heard one time---"A-shoe, A-sandal, A-sneaker!"  She cracks herself up every time.

I send an email to cancel plans I had for tomorrow.  It will be a napping day.  I wonder as I often do how Tony makes it through the day.  I wish he'd call in sick sometimes when he doesn't sleep.  I worry about what all this sleep deprivation does to him.  Isn't that what they do to torture people?  In the night, in my own state, it becomes a scary concern.  Thoughts get dark when you are tired and can't sleep.

The least affected by all of this is Janey.  She never seems tired the day after this kind of sleepless night.  Her system doesn't seem to work that way.  She doesn't even sleep late the next morning, usually.  She's up at the regular time, ready to rock and roll.

I am trying to keep positive.  I am going over in my mind all the other sleepless mothers out there, and the ones in far worse positions than me---awake in a hospital watching a sick child, awake worrying about a child that hasn't come home, awake because they don't have a bed.  But sometimes, the contrary part of me thinks about all the people that have it easier instead.  That's not useful.  I think about articles I read where a parent is freaking out over bad grades, a sassy mouth, not eating vegetables.  I wonder if they realize what a miracle they have---a child than can talk, can understand, a child with a bright future.  Sometimes late in the night I don't think nice thoughts about those parents, even though I am those parents, with two sons that have bright futures.  

Janey is still awake.  She is still jumping.  So I will think about the parents I know must be out there right now, staying awake with their own autistic child.  Parents living my same life.  I wish I could talk to them, right now.  That we could all feel less alone in our own houses, getting through our own nights.  I hope we can all help each other make it through the nights.

What Made Janey Autistic #2 in a series

I want to say before I start this entry that I am not a doctor, obviously, and I am using medical ideas to write this that I have remembered along the way.  Please don't take them for hard facts, as they could be wrong!  What I'm trying to do here is give my thoughts based on what I've read and heard, which is I think what we all try to do with figuring out this autism bit!

That said, my theory #2 of what caused Janey's autism is that autism is an autoimmune disease, and our family is for some reason heavily prone to autoimmune diseases.  As I understand it, an autoimmune disease is one in which the body's own defense mechanisms get overactive and attack the body they are supposed to be protecting.  The idea is that something triggers the body to start attacking the brain at some point, causing autism.  It could be some little sickness we can't even remember the child having, or some other trigger that is impossible to figure out.

Our family tree is full of examples of diseases that are at least in part autoimmune.  I have a pretty much non-functioning thyroid and have to take large doses of thyroid replacement every day.  I also have asthma.  When I was pregnant with 2 of my 3 kids, I had pre-eclampsia, which is thought to be another AID (auto-immune disorder, so I don't have to keep writing it!)  Tony is an insulin-dependent diabetic, a type that is kind of a cross between type one and type 2.  Freddy has asthma like me.  My mother has Raynaud's Disease.  My sister, my mother, Freddy and myself all have pretty severe seasonal allergies.  My sister had thyroid cancer.  My uncle and grandmother had or have disfunctional thyroids, like myself.  Almost everyone in Tony's family has the same kind of diabetes he does---his brothers, his father and many aunts and uncles and cousins.  The list could go on and on.  We are poster kids for AID.

One, someplace, I read that another sign of being prone to AID is when the MMR vaccine doesn't take as a child.  Both my sister Carrie and I were tested when we were at child-bearing ages, and were found to be not immune to rubella, and had to have another shot.  Our immune system fought off even the vaccine dose as kids, and didn't therefore get the immunity.

The AID-autism connection just makes sense to me.  You aren't born with AID.  Something triggers them.  That would explain why kids develop autism as they get exposed to more things in the environment.  Some people are pre-disposed to AID---not every kid is going to be triggered to be autistic.

A weird thing that also seems like a connection to me is how rarely Janey gets sick.  She doesn't get the colds or flus or viruses that go through her classes.  She's missed almost no school days due to illness in years.  William, who was originally also thought to be on the spectrum, is the same way.  Freddy gets everything that goes down the pike and more, so it's not just a family trait to not get sick.  I think Janey's immune system is overactive.  She gets rid of any illness that comes around, and does so overactively.  I can see how at one point, something might have triggered her body to go all out on attack, and mistakenly went for her brain, too.

As with the pregnancy/fever/flu theory, the AID theory could easily explain Janey's autism.  I wish it were the last thing that could, but there's more!  #3 in this series is coming soon.