Saturday, June 25, 2011

Milk and Nice People

Yesterday afternoon, while I was helping Maya figure out a new game, Sam stole the carton of milk from the fridge and threw it around the living room. The rug was saturated and the piano had a big puddle on top.

As I cleaned up after dinner, Sam grabbed the salad spinner out of the sink and threw the leftover salad all over kitchen.

That was day one of the countdown until ESY begins for Sam. Come on, July 5th. .

On the positive side, neighbors have been calling me from various stores to see if I need anything. It is an amazingly helpful thing. Yesterday, a friend from work picked up bread and dish soap and this morning a neighbor brought over bagels. Since, when Mark is at work (6 days a week), I am homebound with the kiddos, I can't run out to get little thing like that when we need them.

Friday, June 24, 2011

New Therapist(s)

I am about to express my annoyance over new therapists. Please note thought at these therapists are lovely, dedicated, well-trained and well-intentioned women. I am just generally pissed off.

We are incorporating some new therpaists into Sam's home program. Why? Because I am Master of the IEP (yes, I have given myself an official title)Sam will get 8 hours a week of home therapy continous throughout the year (no breaks in the summer). This is in addition to his school and extended school year program. Will it make any difference? I hope so but I doubt it.

How did I get this many hours? I carefully wrote letters detailing the specific actions Sam engages in that create danger for himself and others. I also pointed out, in writing, that I was keeping anecdotal records of his behavior and making video tapes of Sam in our home. I also mentioned that I was considering private placements for Sam for which I expected the district to pony-up (considering all the documentation I have of his lack of skills developments and so on. . appropriate education environment. . )

The frustrating part about adding new people is that each person askes the same questions about Sam's behaviors. (what is you give him something appropriate to throw? so you make him clean up? have you tired an activity schedule? and on and on). Yes yes and #$@^#*& yes. We have been working at this home program for nearly three years with trained professionals and YES we have tried it. It doesn't work. Nothing works. He is stimming 90% of the time. He will not substitute something appropriate because part of the appeal is the loud thud and the way things break when they hit the floor. Making him "pick up" did not work in the classroom so why do they all think it will help at home? We make him do it because children should clean up after themselves but it has no effect on whether he will cover the floor with books a minute later. He will only follow an activity schedule if someone stands over him and enforces it. even then his limit is about 2 activities. He is capable of doing a puzzle or stringing beads but those activities hold no value for him so he will not do them unless forced. We do them anyway but after three years and no change in his interest or ability it seems like a waste.

So, while I am very happy to have these extra hours because maybe, just maybe they might help and they give me psychological and physical break (and those of you who know me know I am getting ready to add the psych hospital to my speed dial - for me or for Sam - who cares?), I am not convinced they will do much. The only suggestions a whole team including behaviorists, teachers and aides has given me are to make him clean up every 10-15 minutes and put him in his room (which is almost a "safe room" at this point since I had to remove almost everything from it). I made them promise out loud that they wouldn't call child services on me for shutting him in his room.

A number of people have asked why I don't just take the books away. After losing quite a few books I DID remove some books and box them up. I don't have anywhere to store those boxes right now so they are in the living room looking lovely. I also have another set of shelves in another room he hasn't gone after yet (although he is checking them out from time to time)and I moved some item there. The problem is, if I take the books away he will move on to the next thing. He is throwing the books because I took away the last thing he obsessively threw (blocks). Giving the blocks back, unfortunately did not reverse the habit. I know what he is considering for his next obsession: the picture frames. I could remove those too but then what? This is a compulsion that can't be blocked with the basic behavioral tools and I can't turn the house into a psych hospital. The girls deserve to be able to play. The big problem is that Sam has no other interests and no amount of ABA has been able to develop one in him.

The additional therapists are wonderful as I said before but I am already seeing looks of "holy crap" on their faces. They have reported back to their supervisor that Sam is one of the toughest cases they have seen. And while the validation that I am not crazy or doing something amazingly wrong is nice, it doesn't make me think that thing will improve any time soon.

On the plus side, due to generous support from family members who are hoping to keep me out of the psych hospital, Sam is probably going to day camp for two weeks in August.

Sunday, June 5, 2011

Sam Stimming


video


This is Sam stimming with books (the voice in the video is Maya who is a bit jealous because she wants to make a video too). He does this most of his waking hours when he is in the house. When he is out of the house he does the same action but with other objects. The resulting mess is maddening. The sound of books hitting the floor still makes me cringe. We make him "clean up" but it has no effect on the behavior.

Diet Romance

I have been flirting with the idea of putting Sam back on a gluten free diet. We are pretty confident Dairy free did nothing for him last time around. He doesn't like milk and only eat sheese and yogurt anyway. I think I am thinking about it because one of the books I have had to rescue from Sam is Special Diets for Special Kids. I didn't find it to helpful the first time we did "the diet" because Sam couldn't have eggs and many of the recipes called for eggs. He has been cleared by the allergist to eat eggs now so I might get more use out of it. I re-read her story at the beginning of the book and it sounds so similar to ours.

I bought a bunch of gluten free products at the store today and when I checked out and realized the cost I had second thoughts . . .

THose of you out there who are GF, what do you do for lunch? Sam has to bring lunch to school and I haven't found (or made) a decent GF bread. GF pasta doesn't re-heat well. I am at a loss (I have already read the TACA site).

I don't know if we are going to head down this read again or not but I am going to at least start introducing more GF foods into his diet this week to see what he tolerates.

Anyone out there with a success story?

Saturday, June 4, 2011

ups and downs

Ups

-We are having some success with medication (do I still need to give the usual speech about how I never imagined putting my child on meds like this. . .?). He takes a few but the one that has helped is Strattera. The neurologist said that it only seems to help about 50% of her patients who try it. It helps Sam mellow out a bit. Before Strattera he was so overstimulated and uncomfortable in his own skin then he was jumping up and down constantly, flapping wildly, vocalizing in a high pitched scream and running back and forth like a wild man. His behaviors are still difficult but the absolute frantic mode in which he used to operate has been brought down a notch. He is also sleeping better. Most of the time if he wakes up, I can take him to the bathroom and then put him back to bed. He still has 4 am mornings sometimes though.

-Sam will likely get a significant increase in his home support hours from the district at his next IEP meeting. I sent in a couple of carefully worded letters and documented, through notes and videos, Sam's dangerous behaviors.

-the baby is smiling and "chatting" with me every chance she gets.

downs

-Sam continues to obsessively destroy our books. He empties the shelves multple times a day and throws the books around the house. He has no alternate interests so diverting him is impossible. He sometimes take a break from throwing the books to chew them. The behaviorists are getting on my nerves because they keep offering suggestions that don't work. They say make him pick them up. We have been dealing with throwing for years and we have tried that. It doesn't work. It has NO effect on whether he will throw again. In the classroom they have determined that making him "pick up" doesn't work so why do the same group of people keep telling me to do that at home?

-Sam has done a few things lately that have hurt Maya. He has knocked her off a chair, pinched her arm until he left a mark, yanked her arms really hard and made her cry- to list a few. His concept of "other" is limited so he doesn't understand he might hurt her.

- I am feeling the effects of fatigue from the past few months. I cannot remember that last time I had more than 3-4 hours of sleep. It was hard to sleep during the 3rd trimester but with the addtion of the broken arm it became nearly impossible. Now the arm is getting better but I have a nursing baby who does not sleep through the night. Often both of the older children need to go to the bathroom during the night and they both need help. I went back to work when the baby was just about 7weeks old. It is too much. I feel stupid saying that considering what is going on in the world but I am just barely functioning. The combination of nursing all night, getting up at 5:15 to get all the lunches ready, get dressed, nurse again and get the girls out the door by 7, then teaching ( and trying not to leak milk in front of the students and trying to find time to pump), then coming home to manage Sam and various therapies and the house and to worry over Mark's massive financial issues that never seem to improve - too much. I am forgetting things, dropping things and by the time I put the kids to bed my vision is blurry. I am hoping that summer break brings some relief.