Saturday, October 30, 2010

Sam has continued to have sleep issues this week despite my manipulating the things he already takes. I spoke to the neurologist again today and we are adding Clonidine. I have no idea if it will work. I am pretty much assuming it won't. Even if it does I am pretty certain it will stop working a few weeks after we start.

Sam continues to have episodes of chewing/lip smacking/teeth grinding in his sleep. My husband now thinks it might be seizures too.

I want to have hope because we are trying a new med and Sam is starting a new school but I really don't feel any. AFter a day of pulling rocks out of Sam's mouth, trying to stop him from throwing things at the ceiling, narrowly avoiding a major accident when Sam threw a boot at the dinner table missing the light fixture and my husband's plate by inches, and trying to explain to Maya that her brother just doesn't understand b/c he threw a shoe at her face, I don't have much positive left. He isn't being aggressive, it is all stim. This was all after a day in which he had lots of attention and lot of chances to work out his sensory issues. We played outside for hours - he went on the swing, jumped on the trampoline, and ran. Nothing turns down the stims.

Hopefully it will get better but here's the thing - the problem with throwing all your energy into trying everything is that eventually there is nothing left and you are really really tired.

I miss the little boy I had 3 years ago, before these stims came out, more than I can possbily describe.

Tuesday, October 26, 2010


Sam had an odd episode last night. He woke up wet, which hasn't happened in a long time, at about 1am. I took him to the bathroom and changed his clothes. I put him back to bed but he couldn't sleep. He hummed and bounced for about 2 hours. During that time Maya woke a few times (she tends to wake up hungry because she refuses to eat dinner - seriously, I can't get her to eat after 5 o'clock). I am sure all Sam's noises didn't help her relax. At about 3 am Sam came out of his room and I broke with the behavior plan and let him come to our bed like he wanted. Pregnant me was just to tired to fight him the rest of the night. He fell asleep in the middle of our bed and rested very well. It wasn't exactly comfortable for us but at least no one was crying. At about 4 am Sam started making an odd noise in his sleep. My husband thought it sounded like chewing but to me it sounded like lip smacking. Either way, it went on for a few minutes then stopped. Then it repeated a few times. He didn't wake at all.

I looked that up this morning because I thought I had read something about odd motor movements being connected to a certain type of seizure. Lip smacking in sleep or along with zoning out can be a sign of Partial Complex Seizures.

I called the neurologist about the sleep issue and to ask if the lip smacking sounded like a seizure. As I expected, she can't say for sure. We would have to do a video EEG to learn more. I am thinking about it but I have no idea if Sam could tolerate it. As for the sleep, she advised increasing the Risperdal slightly for the next few days to see if that helps. If he is able to establish a good pattern, slowly lower it again. IF it has no effect, reduce and try Clonidine.

I hope one of these options works but I suspect we will battle to insomnia demon for the rest of our lives. I am trying to see if I can spare a sick day from my maternity leave to take a nap.

Saturday, October 23, 2010

The Monster Returns

Over the past two weeks Sam has started waking at night for increasing amounts of time. Last night he woke up at 11:30 pm and he has been awake ever since. We have not changed medications or supplements and we have not changed his routine. I knew we would be back here again. Every night since the behavior plan was put in place I have been going to bed with my fingers crossed. It started with middle of the night wake ups. I would take him to the bathroom just in case and then put him back to bed. Each day his level of protest grew. As he became more upset during the night it got harder for him to go back to sleep. Last night he went to bed at 8 and woke up at 11:30. Then he tried to come out of his room every 30 minuted or so. Finally, he gave up trying to come out at about 3 and settled for making noises and kicking his wall. At 5 he came out again and he was done for the night.

I am pretty much out of ideas. We have a routine, he gets lots of outside time most afternoons, he had plenty to eat, his room is a good temperature, he has a white noise machine. . so now what? I really am not convinced it is worth continuing to give him risperdal if is isn't going to help him settle down when he really needs to. I am going to call the neurologist but I don't know if this is one of her Saturdays at work. Not sleeping is not an option - for him or me. Clonidine? more melatonin?

Thursday, October 14, 2010


Do you believe in signs? I don't know what I think. But today I thought I was being pointed in a certain direction when I visited the new program Sam may attend.

Many months ago, one a particularly bad day I sat on my deck with my head in my hands and cried (this happened many times but this day was important to the story). My nearly 90 year old neighbor spoke to me a little later in the yard. She asked about Sam and about me. I don't remember how it happened but somehow in the conversation she offered me one of her statues of "the blessed mother". I think it came up because I mentioned that one of Mark's patients gave him a saint card for Sam and I asked what she knew about that one. How do you turn down the offer of a statue of one of your neighbor's most sacred figures? SHe gave me a very simple white figure of Mary. It is in my dining room and when I walk by I am reminded of all the things mothers go through. WHen I arrived at Sam's new program, which turns out to be housed in a Catholic School, th, essentially living with our hearts outside of our bodies. There was almost the exact same statue right out front. I realize that is not huge but it struck me as I saw it.

In a previous post, I mentioned hearing about an Episcopal church that has a service for families who have members with Autism. When I visited Sam's new program I found out that the church is about a block from the site and, in fact, they rent 2 classrooms there as well. I accidentally drove by in on my way home. Another sign?

Sunday, October 10, 2010

Church Search and School Update

I tried a church this morning - on my own, without the kids. It was really lovely. The congregation is tiny - there were about 50 people there total. Because the congregation is so small, during the passing of the peace, everyone literally greeted everyone else. For the last song, everyone held hands. It might just be hippy-dippy enough for me. I enough just having an hour of peace and quiet. I also think it was helpful for me to remember to think about people besides myself - to remember flood victims in Pakistan, people who have lost their jobs in this economic slowdown, victims of violence in the Sudan, and people who are sick and dying. I was able to put aside being sad about Sam and all his Autism has taken from our lives (and his life)and think about how lucky we are to have jobs a safe place to live.

I might go back another week or I might try a couple of other places. There is another church of the same denomination in a different town and I might check that out. I also heard about an Episcopal church that has a service designed for families dealign with Autism. It is a short service and the kids are not expected to sit the whole time ot to be quiet. I would like to try that one week as well. Then I have to make a choice. I don't know if I want to make church my "get away from it all" activity and just go by myself for now or if I want to kind a place I can bring the kids. I am not sure I would get the same benefit from a service with Sam chewing paper, jumping off the pews and making his noises. He is not going to understand the concept of church so is it worth choosing a place based on him? In a perfect scenario the church would have a regular service with a special needs Sunday school room. Then, I could get the nice calm church service and Sam could have an interesting place to play. But I can't find such a place. Tough call.

I met with the Director of Special Services for my town and he was open to considering another placement for Sam. True to form I brought 2 typed pages of notes on my concerns (since my first negative experience with the district I have been a nut about writing down my concerns and requests. That way everything is documented and dated - most special education issues have time limits and that way no one can jerk us around). He actually seemed upset that we were only presented with one option for Sam's original placement. Now, it is very possible he was giving me a sympathetic act. I am visiting the other option this week. It is another public school program a couple of towns over. I have heard good things from other parents and I know this school has more experience. It may be no better but I am excited to see. If it is no good then I have to battle for other options.

Monday, October 4, 2010


Both of my kiddos take "dance class" this year. Maya takes a Saturday morning class for 2 year olds. They have to wear full ballet gear (pink ballet shoes, pink tights, and a pink leotard). I was skeptical at first. 2 year olds? Really? But Maya loves to go to places full of kids so, since pre-school was out of our price range this year, I put her in dance class. SHe LOVES it beyond belief. The first day, when other kids cried or clung to mom and dad, Maya marched right in and got busy. They don't exactly get a lot of dancing done but the 45 minute class is full of great activities. They learn to follow directions, do things in a group, and pay attention to a teacher. The very very early stages of dance are introduced - toe pointing, leg lifting, "arms like a pizza pie". Maya cries when it is time to leave. I am sure that any recital they do will be ridiculous (did I mention they are 2?)but she is learning a lot along the way.

THe biggest issue I have with it is what to do with Sam while Maya is in there. The first day, he did a beautiful job listening to his earphones and eating a snack. Last week was a disaster. There is a door at the end of the hallway with an alarm on it. . . Luckily for me the owner took Sam into one of the other studios and let him run around. I ran to the bathroom to try not to cry in front of the other parents. As I have said many times, Sam has NO appropriate interests so I can't bring him a game, a puzzle, a handheld video game or anything like that. I told my husband that I really need him to work his Saturday schedule out so that he can either stay home with Sam or take Maya to class. We are getting to the point where I really can't do all this alone anymore. My husband is not used to having much more responsibility than getting Sam on the bus in the morning. All other times, including weekends, it is assumed I will be responsible for the kids. Now that they are staring to do things outside the house I need him to fugure out how to be more involved.

Sam also takes dance class. The owner is an amazing person. A few years ago a mother with two autistic daughters approached him and asked if he would consider doing anything for autistic kids. She was having a hard time finding anything in which she could enroll her kids outside of school. The Beyond Boundries class was born. There is one teacher but some of the other adults that work there and some of the students who dance there help out so, usually, each kids has a one-to-one "aide". I signed Sam up because the owner of the school is my neighbor. I really didn't think it would work out. We tried sample classes over the summer and Sam was way to hyper to participate in any of it. But I signed up anyway. As the start date grew near I began to doubt whether this was worth the time or the money. I was ready to quit before we even started. The first class was as ridiculous as I expected. Sam put everything in his mouth and ran around the room like a madman. The second class was pretty much the same but he did clap his hands and sway a few time. Today was our third class and Sam did great. He is still nowhere near the level of participation the other kids demonstrate but the difference from the first day until now is huge. Sam jumped with the music a few times, kicked the pad when instructed, swayed back and forth with his aide (the owner). Much of the time Sam looked spacey and confused but there were a few moments when he actually seemed engaged. I think we will stick with it for a while.

Sunday, October 3, 2010


So the district seems open to considering other placements. My case manager told me on the DL that she was pretty sure she was going to get this call from me b/c of my comments at Sam's last IEP meeting and she pointed otu Sam's test scores to the director. I want to see the other public program but I also want them to show me what other options might be available. I am supposed to speak to the director directly tomorrow. Cross your fingers for us.

On the sleep front, Sam is doing better. He often wakes up at 5 which isn't exactly the best thing but sometimes I can convince him to lie in bed with me for half an hour or so. On most days I have to get up at that point anyway. Unfortunately, a few days after Sam started sleeping through, Maya started waking again. She started sleeping a bit better this weekend. I really hope their sleep patterns even out before I have to deal with newborn night wakings again.

As for the pregnancy, I told my boss but I asked her to hold off spreading the word until all testing is complete. I am almost at 17 weeks and I don't know how much longer I can stay out of maternity clothes. I am much sicker with this one than the last. For me, it has been worse each time. Since I still have nausea and I still throw up from time to time, I am afraid it may be this way the whole time. The worst is when I take my prenatal vitamins - about 20 minutes later I lose everything in my gut. Fun.

There are moments when I think having another child is a great idea - times like when Maya chases Sam or he chases her and they laugh together. Other times, I think I have made a big mistake. Not that the child is unwanted or anything but that s/he may be more than I can handle. I won't be able to go to a grocery store or do much of anything unless I get serious help or my husband is able to set up a different schedule. I am not sure I can deal with even MORE isolation.