Monday, December 31, 2012

End of the Year

The year comes to a close today and I can't help but wish I had more to report.  Despite a huge jump in therapy hours and medication changes, we had had very little progress for Sam.  Developmentally, my 21 month old has sailed past him. He has less language than when he was a toddler and he is more destructive and hyper than ever.  The only thing we have defeated is the really dangerous type of tantrum he was having - the kind in which he scratched up my arms or legs, threw things at me and the girls.  He comes close from time to time but he hasn't had a major blow up for a while.  That seems to be the result of meds. 

 In terms of other behaviors, nothing helps.  I go to meeting after meeting and plead my case for someone, ANYONE to offer up an innovative and intensive apporach but every so-called behaviorist gives me the same lame suggestions that I have been trying for years.  Have you tried removing the things he throws from the environment?  He throws anything and everything - books, toys, paper, shoes, spices, boxes of pasta, mail, pens, and so on.  Shall I remove everything from the house?  Have you tried aversives?  We tried what the school claimed was a very intensive behavior plan in which Sam received and aversive everytime he threw something ("non-preferred taste and visual screen were the main ones).  Sam found them aversive but they had no effect on whether he threw again 10 seconds later.  The suggestion now?  Put a lock on his bedroom door and keep him in there whenever a grown up cannot stay within arm's reach - and since I have three children and a husband who works weekends and usually gets home after dinner on weeknights that would be most of the time.  Seriously.  I am sad, angry and frustrated.

 I don't know what I expected really. I have read the behaviorism books too and I don't have any brilliant ideas.  We have tried all the usual interventions. Sam just tests the limits of behaviorism ( don't say that to a behaviorist, they don't like ot think they have limits).  The school says everything is fine, they are working on it, but he hasn't reached the point of "generalization" yet.  When I inquire further though I find that their idea of his doing "well" only exists because they pretty much never let him out of his "cubby" (each kid has a little area with two chairs and a table blocked off with bookshelves for ABA trials) and his aide is always within 3 feet of him.  That is worse than when he was  3 and 4. 

I am sad for Maya who aches to go on more playdates and daytrips like other kids her age but since most parents aren't doing "drop-offs" with 4 year olds these days I can't do it because I can't bring Sam.  I can't invite her friends here because Sam WILL throw things at them (with absolute certainty).  We try to maximize the time we have when he is out of the house but those hours are limited. 

My husband and I are tired- tired of holding on to hope that the next thing might improve quality of life over here just a little only to have it be as useless as everything else we have tried, tired of being hit with things, tired of seeing the girls get hit with things, tired of knowing we can't sit and eat a proper dinner together as a family, tired of knowing that tomorrow is going to be just as frustrating as today. 

Contrary to what the pity party above might suggest, the year wasn't all bad.  I was lucky enough to find a small UCC church nearby that has been wonderful for the girls.  Maya loves the music teacher and she got to be in her first Christmas pageant a couple of weeks ago.  I am hoping full time school next year will be great for her.  Hannah is a sweet and loving toddler who is talking up a storm (although her sleep habits need some serious help) Work is fine.  We have made some headway with some financial stuff.  I started another blog and I have been learning a lot abotu sewing and knitting from other bloggers (check it out over at www.sanitystitches.blogspot.com)

I am hoping as we head into 2013 that it will be different somehow.  I hope to meet innovative therapists and to find out about breakthroughs in medications.  Unlikely, I know, but you are supposed to be hopeful at the start of a new year, right?  It is as good a reason as any. 

3 comments:

Heather said...

Hi I'm Heather! Please email me when you get a chance, I have a question about your blog! LifesABanquet1(at)gmail.com

Spice Island Queen said...

Just stopping by your blog after reviewing the Blog Call comment you left on Elizabeth's blog. I don't really have anything to say other than I'm thinking of you. I do hope that 2013 brings you hope and a new innovative therapist or something in the way of progress with Sam.

Emma said...

Thanks! I appreciate the comment!