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Thursday, January 2, 2014

Why, why, why, why, why?

That is what I have been asking myself about Janey's crying and screaming, constantly.  There is supposed to be a reason for this kind of extreme sadness and anger, something I should be able to figure out.  But with Janey, the best I can do is guesses.  I reckon to say it's probably the best anyone could do.  Here are some of my guesses...

Guess One--- Janey is bothered by the holiday change of routines.  She is especially bothered by an inconsistent schedule.  She knows, at some level, that we go to school for five days and are home for two, and that on the school days, Daddy goes to work, while he's home on the weekend.  During vacation, that is thrown to pieces---there is no school, and Daddy seems to appear randomly---he took off Christmas week, but then had to go back to work, but then it was New Years' Day, now another work day.  School was supposed to be tomorrow, but it's already been cancelled due to the coming storm.  There is no explaining all that to Janey.  On top of that, William is home, for winter break from college.  I am pretty sure Janey had no real idea where he suddenly disappeared to last September, although we have taken her to see his college and room several times.  And now he's back, but in her eyes, who knows for how long?  I even was gone one night, for my semi-annual night out with friends, not coming home until after midnight, which I am sure in Janey's eyes was another scary disappearance.  Of course, we explain all these things to her as best we can, but her level of understanding is very limited (and visual calendars and aides beyond her).  

Guess Two---  Janey hurts in some way she can't explain to us.  I don't think that is the case, but it's possible.  When the screaming is terrible, sometimes we give her Tylenol in case she has a headache or some other pain she can't explain, but it usually has no effect.  She has no fever, no signs of illness, and when I ask her to "point to the hurty place", which is something she seems to understand, she points to nothing.  She can sometimes stop the crying suddenly for an hour or two, and show no signs of any pain.  She gets sick less than anyone I know---almost never.  I don't think it's pain.

Guess Three---  Bad dreams.  Janey is not sleeping well at all.  She seems to be resisting sleep, and not sleeping deeply at all.  I wonder if she is having bad dreams, which are making her scared to sleep.  I am a vivid dreamer, as are her brothers.  I can't imagine how scary it would be to have a bad dream and not understand it's just a dream.  I've had dreams as young as Janey and younger that still scare me to think about.  I've tried talking to Janey about this, about "videos in your head when you sleep" and asking her if she "saw a scary video in her head" and telling her that was a dream and not real.  But I have no idea how much of that she understands, and if she does, there isn't a whole lot I can do about it.

Guess Four--- Winter.  Janey loves to be outside.  But it's been bitterly cold, and snowing a lot, and she just can't spend the afternoon in the back yard as she does in the summer.  Exercise is very important for her, but like a lot of things for children with special needs, not easy to come back.  We are going to look at special swimming lessons, but even that will only be something like an hour a week at most.  The house closes in on all of us in the winter, and I am sure that affects Janey.

Guess Five--- Frustration with her limitations.  I have no way of knowing how much Janey understands about herself.  I wonder if she is able to think far beyond what she can express, and if she is just plain fed up with that.  She showed recently that she can read at least some, and I do truly feel she has untapped potential.  That would be incredibly frustrating, and maybe she is just showing us that the only way she can figure out how to.

Guess Six--- No Reason.  That is sometimes my leading guess.  I don't know if there is any reason at all for Janey's screaming and crying.  Or I should say, any reason that is controllable.  Her bad spells, and indeed her good spells, seem pretty random sometimes.  They come in, last from two to six weeks or so, and go away.  I don't know enough about what cyclical mood disorders would look like in an autistic child to say for sure, and I am not convinced anyone else does, either.  This is in a lot of ways the scariest possible reason, because it means there isn't a lot we can do.  Maybe there is a change of medication, but I have come to realize medication is a guessing game in a child like Janey---a guessing game with pretty high stakes.  If I felt sure she would be helped by a new or higher dose of medication, I would be very open to it, but that is always sometimes to be taken very seriously.  And there are no guarantees it would help.

And so we are left with guessing, and hoping.  There isn't anything else we can do.  I think sometimes people outside the world of special needs think there is some number you can call when it just all becomes unbearable---that I can say "Okay, this is just too much.  I give in" and I can call that number and all kinds of wonderful help I've been for whatever reason resisting taking advantage of will kick in.  The truth is---that help doesn't exist, not in any coordinated or accessible or affordable way.  So we just keep on keeping on.  We don't have a choice, frankly.  And the love we feel for Janey, for all our Janeys, is every bit as strong as the love anyone has for their children.  That is how we do it, when people ask how we do it.


Shanti said...

There is so much in this piece I can relate to! My daughter doesn't scream so much as go through cycles where she is angry and aggressive and then go back to being clam and sweet. I am constantly guessing what makes her shift. What you've described here sums up the reason I hate autism but I love my daughter. Some say that you can't hate autism and love your child. I say that is bull-oney.

Unknown said...

You're so right when you say there is no "magic number" when things feel just unbearable. I have those days too. And like you, I just keep on, keepin on.

Anonymous said...

I feel like i'm reading about my daughter Ellie when you describe the crying cycles and possible is literally the same list of "possibilites" that we are working with. Our ABA team has tried to track the crying behavior to see if there is a time of day or rationale for why Ellie goes into these fits of saddness/ anger...and it's seemingly a total mystery, without any rhyme or reason. Its so frustrating.

Tachyon said...

If it makes you feel better, my son is gifted with ASD, and he is incredibly verbose. We still wind up going through pretty much this exact troubleshooting list with him. Teachers and I (and hubby) have exchanged emails for years trying to figure out what set him off today when he was fine yesterday. I will say this much: it's rarely pain. Although, my kid will have freakouts on such an epic scale that he will GIVE himself a terrible headache. He does have a lot of problems with nausea, though, the INSTANT he becomes stressed.

My son is 10, but he works a lot with ASD kids, and he's a pretty good translator if you ever want him to talk to you (privately through email or something) to help you interpret what is going on.

He's saved our butts a few times while providing care for our severely ASD client.

Tachyon said...

Do you have respite care? Our client (and neighbor and friend) gets a lot of respite care hours and several overnights provided to him through a local company. He also gets about 10 hours a week of care by Medicaid care providers.

We need to email each other. we've just been to a workshop on dealing with these issues and about all the benefits out there for kids. Even my son qualifies for a 10,000 dollar "scholarship" to use for uncovered treatments and time off.

Seriously we should talk.

Take care