Thursday, November 14, 2013

Six Great Weeks---Why?

The last six weeks or so with Janey have been the best stretch we've ever had.  By far.  She has been happy, sweet, fairly talkative, fun to be with...she has been incredible.  And so of course because I'm never one to just let sleeping dogs lay, I have to try to figure out WHY.  Because I want it to last forever, against all odds.  So here are what I think the reasons are...

1.  A great classroom, with fantastic teachers, a wonderful ABA specialist, aides that get her, classmates that love her, schoolwork tailored to her, an afterschool program she enjoys..what everyone would dream of in a school.

2.  The right medication mix and dosages.  I hate giving credit to medication, but once we started the current regiment, it seems like whatever inner demons keep Janey from being engaged in the outside world, whatever torments her that we can't in any way control, has quieted down.

3.  Better sleep to some extent.  Janey's sleep is still far from ideal, but she is going back to sleep more easily when she wakes up in the night, and is sleeping a bit longer hours.  Part of that might be finally finding a meltable version of melatonin, which we give her when she wakes in the night, and part of it might be the cooler weather or who knows what, really?

4.  The "snuggle on Mama's bed" breakthrough.  When I finally figured out what Janey wanted when she said "Snuggle on Mama's bed", it made a big difference.  It means she wants me on my bed, where she knows where to find me.  She doesn't ask for this day and night, which would make it impossible for me to do and still live a life, but when she is anxious, she seems to need the security of knowing exactly where I am and that she can come get a hug when she needs it.

5.  The Screaming Room.  When Janey starts her ear-breaking screaming, which is still happening now and then during this great stretch, we have started consistently taking her into the bathroom and telling her that is the screaming room, and we will stay there as long as she screams.  It seems to shorten the spells, as she wants to do more interesting things than the small room allows.

6.  A good vicious circle.  When Janey is happier, I think we are more confident that any upset won't last for days, as it literally used to when she got upset.  So we react more calmly and perhaps firmly.  Reacting this way is impossible if she's been crying for days and shows every sign of crying for days more.  You just can't be rational in that situation, but if the crying is isolated, you can be.

7.  Luck.  You could have all of the six things listed above down perfectly, and Janey could still be in a horrible mood.  I know that, and I feel incredibly lucky this good mood has lasted as long as it has.  I don't take it in any way for granted, and I know it could end at any time.  There is so much we don't understand about our girl.  We don't understand her moods or their triggers at all well.  We are left guessing, as I am doing here.

As we head into the holiday season, I hope beyond hope that Janey stays happy.  If she is happy, all the rest is a bonus.  If she is happy, we are happy.  If she is happy, then autism and intellectual disability and all the rest matter not a whit. So I am crossing my fingers, knocking wood, tossing salt over my shoulder---whatever it takes.  We love you, Janey.

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