Sunday, May 22, 2011

400 Days

It's been about 400 days or so, 400 days of tantrums every day.  It's been like ... 60 Sundays, Sundays full of - the best way I can describe it is like rolling storms, rolling storms of tantrums, crying and screaming and crying, and flopping to the floor and crying and self-injurious behavior, on and on, it never stops.  We have had maybe ... five days off from the last 400?  That's not enough.  Some times I think we are not going to be able to do it.  Sometimes I think about having a little baby here and this all going on and I just - I know I can't do it.  I don't know what we're going to do.

I try to think, well, we are working on it.  We are seeing improvement.  But that's a lie.  No one knows why he is having these tantrums, and even though he is pointing at the iPad and putting on Signing Time when he wants it, he is still having these tantrums.  Even though the weather is warmer and he can go outside, he is still having these tantrums.  Even though everything, he is still having these tantrums.  No one can help us and no one knows what to do.  Sometimes, just to amuse myself, while he's screaming, I say, "Anthony, what do you want?  What is the function of this behavior?  Let me gather some data and make it better".  That's what we're doing at his school.  We are trying to figure out the FUNCTION of the BEHAVIOR. We are GATHERING data and making CHARTS.  We don't BELIEVE in SENSORY ISSUES, we believe in BEHAVIOR.  But when I ask Anthony about his behavior, strangely, he doesn't answer.  He doesn't know and I don't know and no one knows.  So.  I am trying to think of a way to put a good spin on this but there really isn't a way.  It just sucks and it's sucked for around 400 days and I see no reason why there won't be 400 more and 400 more and 400 more, the end.


Bonnie@TheFragileXFiles said...

I posted your blog on Facebook, in hopes that one of my many friends with autism and Fragile X in their families will have some answers or suggestions for you. My heart breaks for you, I hope you are able to figure out something.

Jessamyn said...

Oh, Joanne. I just read this particular entry just now, and it *is* just so heartbreaking. I hope you and he can figure out why, and that there are not 400 days over and over stretching out ahead of you. I would think even just a little improvement would make such a huge difference in dealing with the tantrums. Just oh. I so wish some easier days for all of you soon.