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. 

Autism's Dirty Word

Sam has developed some aggression recently. Aggression is a word many of us hesitate to use in reference to our children.  Having it recorded as one of your child's "issues" can close some doors since not every program is equipped to deal with an aggressive child.  Also, especially with a kid like Sam, "aggressive" just doesn't seem to fit what I am trying to say.  To me, aggressive suggests that the person intends to cause hurt or harm to another.  It suggests more awareness than Sam has.  But, for lack of a better way to explain it, Sam has been aggressive. 

His episodes tend to be either in response to being told "no" or part of an OCD fit.  When he is told "no" to something he really wants (but just can't have) and he is in one of those moods, he throws thing hard at that ceiling, he hits me with the base of his palm, and he scratches.  If he is on the floor he goes for my legs and rakes his nails down.  If he is standing or on a couch he goes for my arm.  The picture shows the results of one morning tantrum.  The OCD fits are something new - he starts to scream and cry because the curtains are crooked, the pillows aren't right, the shoes are messed up - even if he/we fix what he wants it doesn't matter because he will just fixature on something else.  Sometimes he lashes out in those moments.  I cannot lift him up to his room to separate him from everyone when he gets like this.  I stay near him even though it means getting scratched because he is happy to go for the girls if I am not close enough. 

These episodes are not a constant thing.  They seem to come in waves and they are worse when he doesn't have school and his day is less "on the go".  So we are doing our best to keep him busy.

Broken Glass

Sam likes to drop things.  And throw things.  Pretty much all the time.  Usually he fixates on hard plastic objects or cardboard boxes but sometimes he selects dangerous things. Sam decided to punctuate his morning today by smashing one of Maya's snowglobes on the living room floor whiloe I made him breakfast.  Yes, I realize that the snowglobe should not have been where he could get it but at this point there are very few places he can't reach. 

Sam has a pretty intensive behavior plan for throwing/dropping at school and we are starting to bring it home during his home program sessions.  I am thinking about scanning it and posting it in case anyone wants to learn about behavior plans. 

A Nice Doctor

I met with a very nice doctor today.  I almost didn't go.  I got a call on Monday reminding me that Sam had an appointment with the developmental pediatrician.  I totally forgot about it and my first thought was to cancel it.  THere is really no role for a developmental ped. at this stage of the game.  We don't need a diagnosis and he doesn't handle meds.  It is one of those appointments that you have to make about 8 months in advance so about 8 months ago someone probably said to me, have you followed up with the developmental pediatrician?  and it seemed like a good idea at the time. 

I wanted to cancel because dragging a baby and Sam (Maya had camp) to one of the worst areas  (the hospital is surrounded by "gentleman's clubs") just made me want to vomit.  But I thought about it for a while and realized that if it went terribly, I just wouldn't go back.  If it went well I might leave with some suggestions. 

Sam was a complete nut, throwing things that whole time. Hannah was a doll.  The doctor was very kind.  He didn't offer any new information but he did give me some suggestions of psychiatrists who work with severely disabled kids.  None of them take my insurance, of course but I will at least call to find out their fees. 

And he said he was sorry things turned out this way.  He was the one who originally said he thought would turn out to be on the higher functioning end.  He didn't say it in a condescending way.  It was sincere and well, just kind.

He even called me when I got home because he thought of another specialist in another state I might want to call - also doesn't take my insurance but that fact that he continued to think about Sam was very nice. 

Losing teeth and losing faith in doctors

Sam lost another tooth yesterday.  I only found out becasue I happened to look in his mouth at the right angle.  He had no idea.  Or if he did, held no significance for him.  So far this makes 3 teeth out.  THe first he got a bit upset about, the second he must have swalloed in his sleep and then this one must have come out during the day.  I am sad that this developmental period means nothing to him but I am happy that it is not overly upsetting to him.  I suppose it could be worse.

After weekly follow up calls to the meurologist, I finally got a call back about 2 months after I sent the video of Sam foaming at the mouth.  The doctor still hadn't been able to open the video and said we woudl just talk about it at Sam's next appointment - in August.    AUGUST.  So he hasn't seen the video and has no idea if it is something serious and he says don't worry about it we will talk in August.  I would love to find a new neurologist but I really don't think there are any fantastic doctors out there for Autism.  I have list from various school with "parent recommendations" but this guy is on one of those lists so I don't know how much help they will be. 

IEP Season

The school year is winding down and so IEP season is in full swing as we all plan for next year.  Sam's meeting went well.  It seems that instead of dropping items on the floor hundreds of times a day he is only doing it tens of times a day.  Woo Hoo! (insert sarcastic eye roll) Without any debate, the district consented to continue Sam's after school home program without any breaks in the summer and they added additional hours in August.  He is set to continue at his current public school program- which is a good program-next year.  Sounds good right?  In the moment I went with it and signed the IEP.  I know how lucky we are to live in an area where special education services are provided at this level. 

but. . . . . I met with the special education director of the district in which I work.  We discussed Sam's (lack of) progress and behavioral issues.  SHe told me that if he were in her district she would most definitely look for a private school program for him.  She helped me clearly articulate why his current program is not the most appropriate option for him.  She confirmed one of my big concerns - Sam's current program keeps kids through age 14.  After that is is assumed they will go to life skill or job training programs.  Sam is not on that path.  Unless he has major congnitive gains, he will not fit into a program like that.  At 14 he is likely to be 6 feet tall and very strong.  The chances that we will be able to get him into a good private school program at that point will be very slim.  THe chances are better while he is younger.  She also told me that around here, it isn't much cheaper to send kids like Sam to public programs.  SHe urged me to push for it now.

so. . .  I left a message for my case manager last night (you know, just to make sure she has a great holiday weekend).  I will follow up with a letter today. 

Let the games begin.

Maya is 4

SO instead of feeling sorry for myself (and Maya) for not knowing anyone to invite to her party I decided to just send invitations home with all the girls in her class.  I figured there are only about 6 of them and so even if they all said yes it wouldn't bee too big of a gathering.  Four girls came plus two others we know from outside school.  Maya had a blast and Sam managed to only steal a few water bottles and throw them over the fence.