Saturday, August 28, 2010

Siblings and Sandwich

One of the nice aspects of Sam being older than Maya is that to her, he has always been this way. When she came into awareness there was this boy who doesn't really talk, who makes funny noises and chews on straws. Because she is only two, she has not yet defined what is normal in her own mind. Perhaps, because of her experience, her ideas will not be too rigid. In Maya's mind, mommy is this way, daddy is that way, and Sam is another way.

Maya long ago passed Sam in her verbal and play skills. At times she tries to engage him in her doll or kitchen play but often she seems to realize that it just won't work. Sam does his own thing. She is aware enough of his quirks that she does a Sam imitation. If you ask her what Sam does she will drop a straw into his straw box (a big plastic tub with slits cut in the top for him to drop things through - it saves our air vents) and waves her arms saying "Oooooooooh".

One nice thing they do "together" from time to time is chase. Maya will tell Sam, "gonna get you" and he will take off running. She will squeal with delight and try to chase him. They can't reverse roles - Sam only knows how to BE chased and tickled, not how to do it to someone else- but Maya doesn't seems to mind.

Every so often Sam will lean over and stroke Maya's cheek or hum right in her face, acknowledging that she is there.

For some reason, one of my recent obsessions has been getting Sam to eat more appropriate lunch foods. For one thing, as he gets older he will no longer be allowed to have food heated up for him at school. He is allowed in his current classroom but as he moves up, the other building (in a different town) doesn't allow microwaves in the classrooms. I also just don't think it is a good idea for him to eat pasta products allthe time. I decided a few months ago I wanted him to be able to eat a sandwich.

We worked an eating program into Sam's home program this summer and it has gone very well. Prior tot he program, Sam would pinch off tiny pieces of the sandwich rather than take bites. Or he would pull the sandwich apart and lick or pull out the filling but leave the bread. THe program involved started with a full physical prompt along with SD: Take a bite. We faded back to just verbal and gestural prompts as needed as he got better. I also started him on a very easy sandwich - butter and golden syrup (looks like honey). It is easy to bite, the pieces of bread stick together nicely and the flavor is mild. For the past two days, outside of his home program, I have made Sam sandwiches for lunch. He ate them perfectly with only one or two verbal reminders to "take bites". I am very pleased. My hope is that we can add more flavors over the next few months - peanut butter, almond butter etc. Then maybe we can move onto things that are harder to bite like turkey and cheese but that may be asking too much. My hope is to also build in a fruit and vegetable eating program as well. Sam will eat fruit purees (baby food) but rarely will he eat solid fruit.

Wednesday, August 25, 2010

Medication Failure

I had to take Sam off the Adderall. It was working in many ways. Sam was stimming less - he was making fewer noises, he was paying attention a little better and he wasn't throwing things at the ceiling compulsively. Unfortunately he was spending about 50% of his day crying or having intense tantrums. My mother drove down one day last week to try to give me a chance to go into my classroom for an hour but as soon as I got there I had to turn around and come home because Sam was freaking her out by crying and being aggressive. It stunk. The only upside was that my mom got a chance the worst of his behavior. I think sometimes other people think I am over protective about leaving him. I suppose I am a little bit but only because I know how he can be. I don't want to plan to be half an hour or more away doing something important only to get a call that Sam is scaring the pants off a sitter.

Sam has had these types of tantrums before but never so many at once and for such a long stretch of time. I suspected the Adderall might be to blame. I took him off (after talking to the doc) and he was happy again. Unfortunately, he is back to climbing the walls and throwing things at the ceiling all day long.

So, it seems we can't live with it and we can't live without it. (btw, he has been on behavior plans for the throwing for the past 2 years. Nothing helps. I am just waiting for him to smash a light bulb in his or someone else's face)

Thursday, August 12, 2010


Even when I vow to be positive, I have a hard time staying that way. I don't think it is just the result of autism; I think I have always found myself more on the side of worry and frustration. I have been thinking a lot about the source of my most recent bout of anger. I suspect it stems from a combination of the "Just-World Hypothesis" and a sense of entitlement.

The just world hypothesis is the idea that bad things happen to bad people and good things happen to good people. It is something we all KNOW is false but it still lurks somewhere in most of our minds. We perpetuate it by saying things like "what goes around comes around" when someone does something mean (because we assume something bad will come back this person) or "You sooo deserve that" when someone gets something good. We don't mean any harm with these comments but they present the idea that if you are a good person you should get good things and if you are a bad person you should get bad things. So when bad things happen to you, is it payback for some earlier wrongs you committed? Probably not. Plenty of bad things happen to good people but this hypothesis lurks and prompts thoughts like "why me?" and "what did I do to deserve this?"

Then there is entitlement. I think many of us who were raised in middle class homes are guilty of this. We assume that if we follow the "rules" and work hard, we will end up better off than our parents. That is how is works in America, isn't it? My parents were immigrants and I saw them move from supporting us on an assistant professor's salary with very little to their names to earning a pretty good middle class income (my father an ivy league researcher and my mother a full time teacher and part time classical singer). It didn't hurt that they came here with Oxford degrees and did not have to face the racial prejudice many immigrants deal with. My point is, I saw it work. They followed the rules - they made the most of their educational opportunities, worked hard, and they "made it". Halfway through my childhood we moved into a 3 bedroom home on a pretty street in a neighborhood with good schools. We took vacations - nothing too crazy - a week at Cape Cod one year, a visit to the rest of the family in England the next. THey put 2 daughters through college - Barnard for me and Brown for my sister. I guess a big part of me assumed that if I followed the same "rules" I would have a similar life.

But really, just because you do well in school and work hard,
Who says you are entitled to a pretty suburban home?
Who says you should get to go on vacation?
Who says you should earn a great salary?
Who says your children should be "typical" and grow up like everyone else?

People with what look like "perfect" lives may have done very little to deserve them or they may have been the most wonderful people in the world. The Just World Hypothesis is false but it creates frustration regardless.

I realize that happiness is a choice. I can attempt to appreciate the small things that go right in a day or I can moan over the life I wish I had. Happiness is a choice but it is one I am just not very good at making. Obviously, I need to work on that.

Tuesday, August 10, 2010

Ups and Downs

I think the worst is over, for this summer at least. My husband's hip is healing nicely. It won't be back to normal for quite a while and he still has quite a bit of discomfort but the recovery is going better than the first time he had this procedure. He has been able to drive a little this week which is a huge relief. He is trying to go into work a few hours a day which is also a huge relief. As soon as he gets home he has to lie down and elevate the leg and he still can't help out but it is good for him to get out of the house for a while.

Last week was hell week in my mind. Mark was mostly bed-bound and Sam had no ABA or other therapies. Who needs a stairmaster?

Over hell week Sam developed a new obsession - the swing. When he was a baby, he hated swings but once he was moving on his own, he loved them and he has loved them since. Over this past week, his love hit obsessive heights. From the second he was allowed outside each day he began requesting "Wee" (swing). I would push him for a while and then take a break. The second I stopped, "WEE WEE" would begin. After a few minutes break I would concede to push him again. Repeat and repeat. At some point I would let Sam know that I had other things to do (care for 2 year old, cook, clean, wash clothes, wash or feed husband). Complete tantrum. The sort that involve throwing, screaming, pulling, etc. Of course once such behavior begins, I can't give in. He must become quiet and request nicely if he has any hope of getting what he wants. We had some very loud afternoons.

Over the weekend my husband wanted to see if he was steady enough to push the swing. Very nice, don't you think? I thought so, except that he chose the middle of one of Sam's tantrums to give it a try. I think he thought he was helping me out by getting Sam to stop screaming. The thought was nice but by offering to swing Sam in the middle of the tantrum, he was rewarding the tantrum. He told Sam to get ont eh swing and stop crying so he can swing. To me there is a big difference between stopping the tantrum BEFORE getting on the swing and stopping the tantrum BECAUSE he is getting on the swing.

Sam's new medication seems to be ever so slightly quieting some, but not all, of his stims. The vocal stims are less frequent and the straws seem to hold a little less appeal but his attention span remains almost nothing. His sleep is a little better. I had hoped for more as usual but we are pretty much where we always are. It reveals a personality trait I am not particularly proud of - insane jealousy. I am so insanely jealous of people whose autistic children are progressing and learning. I am happy for them as well but in my private moments I am just jealous. What am I doing wrong? - public therapy? private therapy? vitamins? supplements? diets? home program? behavior plans? medication? I have tried it all. And still, except for potty training, Sam has not mastered a single age appropriate skill. He doesn't have a single appropriate play interest - not videos, puzzles, books, trucks, cars - nothing. If you attempt to engage him in any appropriate activity he will scream and run away. He doesn't "get" them. His most recent assessments place him in the <1 percentile on pretty much everything. I can't take him out unless I can physically hold on to him at all times. It. is. not. fair. I know the response to that is "life isn't fair" but really universe, throw us a bone here. I read about families rejoicing because their kids have learned to ride a bike or use a computer or swim or draw a picture. I can't even imagine. Sam can't even focus his eyes on anything long enough to learn to use it. Insane jealousy. People ask me all the time if he likes video games because they have heard autistic kids like video games. I can't even imagine. Sam might enjoy chewing the control or the wires but he would never connect his action with what goes on on a screen.

So there is my confession. I am not proud of my feelings but they are very real. To all of you out there who are seeing your children make great strides - learn to play, to interact, to talk to socialize, to self-care - I am thrilled for you and for the possibilities your children reveal but I am also insanely jealous.